Mark's Journal
Monday, January 06, 2003 at 02:04 PM (CST)
Of course, I created the site and then did not fill in the first journal entry...
Mark and I traveled to Houston to visit M.D. Anderson Cancer Center on December 29, 2002. We met with Dr. Ajani who specializes in gastrointestinal cancers and more specifically, neuroendrocrine carcinomas. He recommended systemic chemotherapy, which took us a bit by surprise as the information we had received to date led us to believe that chemotherapy was not an option for this type of well-differentiated carcinoma. We left Houston with more questions than when we had arrived. Mark is in the process of clarifying a few issues with his local oncologist and Dr. Ajani. We hope to have some sort of treatment plan in place in the next week to ten days.
Thanks you all for your support.
Love, Michelle and Mark
Tuesday, January 07, 2003 at 10:03 PM (CST)
Things are much clearer now, at least on the treatment front. Based on additional consultation with MD Anderson and good old Dr. Belt in KC, I am scheduled to begin chemo on January 13th 2003. I start with 5 consecutive days of treatment followed by three weeks off. Another 5-day regimen and three weeks later we take a look to see how it went. Treatment will be here in KC.
Expecting the usual suspects with regard to side effects, but given my age and current health expected to tolerate it well. Let's hope. On the subject of side effects, since hair loss is likely I'm going to take Max for his buzz on Saturday the 11th and get myself one at the same time. My hope is that it will ease the transition to baldness. It will also help Max, I hope, in that he will have seen me lose my hair and not be too disrupted by the likely side effects of the chemo. We have yet to tell him anything given that I still have no outward signs of being "sick." Plenty of time for that later, if necessary.
Thanks for checking in!
Saturday, January 11, 2003 at 06:33 AM (CST)
I took another step towards the beginning of treatment with the installation of a sublcavian "port" in my right upper chest. The port, which is completely under the skin, provides access to a large vein without the need of yet another attempt to find a vein in an arm. The implant, which was surprisingly large, looked like an upside down cone, cut-off in the middle with the large end attached to a square base. The top part that faces away from my body is pretty much like a pin cushion, which makes sense since I'm told it's guaranteed for up to 1500 sticks. Yipeee! It can be used to draw blood in addition to providing a way in for the chemo drugs.
Quite frankly, I always thought that I'd be paying for a chest implant, just never thought it would be in mine! Sorry, couldn't resist that one. I'll try to remember this is not an age restricted site.
Procedure was performed at St. Luke's by Dr. Greg Gordon. Had to be there at the crack of dawn and was out of there at 9:30. The doctor and everyone else at St. Luke's were great, but I realized this must be the right thing to do when the fourth attempt to find a vein got under way! Special thanks to my friends David Thorne and Kari Grace for picking me up and getting my car back downtown. The sedative was wonderful, leading to a nice nap at the office followed by BBQ for lunch (thanks to Marty Warren for providing the BBQ for me, Kari, and Pam Downs to have a picnic with her).
As expected, the site of the implant is a bit sore still. Dr. Gordon said to expect it to feel like an older brother punched you in the chest. He must have had some mean-ass brothers.
Looking forward to the start of chemo with more than just a bit trepidation. Delighted, however, to being moving forward and getting started with our attempt to treat and beat this cancer. We (Michelle and I) get started with a 12:15 meeting with Dr. Belt to make sure everything is in order, immediately followed by treatment. Treatments will be repeated every day next week at about the same time. Each should take about an hour. Hoping to be able to work through this week, but we'll see.
If you've read this much of my rambling, you are indeed a trooper. Please leave a greeting in the guest book if you'd like. I also realized that many of you may have heard about all this at different times and not gotten the early part of the story. A brief history that covers November/December 2002 will be added to an upcoming entry. This one, however, has mercifully come to an end. Thanks for checking in.
Mark
Monday, January 13, 2003 at 10:02 PM (CST)
Sometime Sunday afternoon it occurred to me that January 12, 2003 was my last official day of NOT being a cancer patient. It made saying goodbye to that day a difficult task. Watched a beautiful sunset from the bank of the Missouri River where it passes through Parkville. Bed had to wait until after midnight when my change of status took place, at least as far as the calendar was concerned.
That, of course, brings us to today. Caught a ride to my appointment with my friend and partner Bruce Tepekian and was met there by Michelle. A meeting with Dr. Belt followed by a walk to the treatment room. Pretty basic room, much like a classroom at St Peter's, just without those little desks. Instead, wall is lined with about a dozen hospital issue recliners. Not many empty chairs the couple of hours I was there.
My nurse Jenni was wonderful. She was the first to use my "port." She took blood and then hooked me up with the needle that we'd later use to deliver the chemo and anti-nausea drugs. Needle stays in all week so I've been stuck for the last time this week. Hooray!
Next, Worked out a few logistical issues with appointments and then got started. First the anti-nausea drugs drip in followed by syringes filled with the actual chemo drugs (three this time). Because the drugs are "pushed" nurse is there the whole time. Rest of the time spent eating the lunch Michelle brought down.
All in all, a pretty smooth day. One of the anti-nausea drugs, Ativan, is also effective at fighting anxiety. It did its job and when asked by Jenni how it was working I told them it was like the feeling you get about three hours in to a really good party. Neither she nor Michelle seemed to worry too much after that. And the news gets even better, Ativan is a drug I can take at home in pill form.
No real side-effects to deal with, but have been warned that they like to sneak around and go to work on their own schedule. Pushed back the buzz cut another week since hair-loss is apparently still a couple of weeks away. Have been advised to drink lots of water, but can eat pretty much anything I want. The result, Sugar Crisp cereal (remember Sugar Bear?) for dinner along with a couple of bowls of ice cream. Still trying bulk up into the heavyweight division for what promises to be a heavyweight fight.
Thanks for checking in.
Mark
Wednesday, January 15, 2003 at 08:05 PM (CST)
First of all, thanks to all of you that have signed in to the guestbook. It makes this truly interactive and helps to make me feel connected to that network of support that we all know is out there for us, but don't get the chance to connect with often enough. It also lets me know that I've given the correct address!
After today's treatment, three-fifths of the way through the first week of chemo. Continued success in managing the side-effects and simply hope and pray that my luck in this regard continues. My concern, however, is that my pre-treatment strategy of "bulking-up" by eating every comfort food I could get my hands may backfire if the anticipated weight loss never materializes. Of course, the hair loss will come through leaving me fat and bald. As if having cancer wasn't enough!
Oh well, looking forward to getting the week over with to see what the weekend brings. My thanks again to my friend Kari for dropping me off at my appointments on her way to visit her mother, Frankie, in the hospital at St. Lukes right across the street from where I get my treatments. And thanks to my friend and newly retired partner David for running me back downtown afterwards. I'm beginning to doubt the purity of his motives since he took the opportunity to take me in my Ativan induced stupor to play pool at our favorite KC pool hall. He claims to have won rather handily, but it's becoming a little foggy in my mind. I suspect he'd say it was my idea, and I must confess he'd be right. I got what I asked for, a great time.
Two more treatments this week and then the three week recovery period begins. Will be monitored during those weeks through visits to the doctor and blood work. Plan on maintaining my regular schedule at work until the next round, which is set for February 10-14 (sorry, won't be able to make the Hawaii blow-out for Emily and Yoric's wedding). Keep the good thoughts, prayers, prayer lines, and various other forms of good karma coming. Max announced tonight that he'd like to go to church. And while He may move in mysterious way, I hope He knows what He is getting Himself into by inviting Maximum in to his home. Looking forward to a little visit myself.
Thanks for keeping in touch, more to come.
Mark
Saturday, January 18, 2003 at 08:29 AM (CST)
With Thursday and Friday's treatments now complete, the first round of chemo is behind us. My good fortune in avoiding side-effects, however, came to an end Thursday night. In a comeback reminiscent of the Forty-Niners recent playoff win against the Giants, the chemo wins one this week. Final score for the week, Dovers 4, chemo 1.
I'm hoping that Thursday's experience was an anomaly resulting from several factors. First of all, as the locals know KC woke up to several inches of powdery snow Thursday morning. 5 inches here in Parkville. Max, of course, wanted the get some play time in before Daddy went to work. Sometime while we were outside I had the bright idea to shovel the driveway and sidewalk. The wisdom of this idea was later that morning summed up by my friend Marty Warren as "dumb." I cannot disagree.
Still doing OK Thursday night before bed, I took an over the counter medication (Senokot). The older crowd will appreciate that one. In the end, pardon the pun, I believe I discovered a new side-effect, constirea. Add to that some good old fashioned nausea and you have the makings of a long and disgusting night.
Given the events of Thursday night, brother Dave picked me up at home to take me for treatment. He stayed in the treatment room and in spite of being a bit nervous, did just fine. He was particularly comforted to know my nurse's name was Mary Beth! Friday just seemed to be in slow motion, which was fine with me. Pretty good night's sleep and the plan for the weekend is to continue to rest, take my pills (yahoo!), and watch some football, basketball, Spongebob, etc., etc.
Will be taking quite a few anti-nausea drugs the next couple days and then over the next three weeks "off" will be monitored for drooping blood counts. Have been told to expect some exhaustion and, of course, the long-awaited hair loss. Still trying to time the buzz cut, but Max just can't wait much longer.
Finally, thanks for checking in and for leaving a message when you can. It really helps to read them and reflect on the wonderful people I've had the privilege to meet over the years and the happier times we've experienced together.
Take care,
Love,
Mark
Wednesday, January 22, 2003 at 07:57 PM (CST)
My apologies for the lack of updates, but since the great snow shovel incident of last Thursday you might say that I've been pretty much on the "run." These are very short runs mind you, primarily from bed to the bathroom and back. Not much exercise nor fun.
The challenge has been staying hydrated. A regularly scheduled visit to the doctor on Monday found me slightly dehydrated. Add two more days without relief and you get to today, which again brought me to the doctor for some IV hydration and more heavy duty ammunition in the continuing fight for regularity. The latest effort involves injecting myself every eight hours to see if tomorrow can be a better day.
This latest adventure did, however, take care of most of my pre-chemo weight gain program. So for those of you looking forward to the fat and bald Mark Dover, that may just have to wait. Hell, I'm not even bald yet!
The IV and new drug seems to be helping this evening as I'm feeling better or, at least, not as run down. My thanks again to brother Dave who tore himself away from work to meet me in the treatment room and drive me home. He even shoveled the sidewalk of today's snow! And, of course, to Michelle as well for taking me to the doctor's office in my miserable state during the height of the messy weather.
Other than that, not much to report. Hoping to be able to go to the office Thursday or Friday and still planning on a day trip to Chicago (no, it has nothing to do with my niece Lisa's message) on Monday. As always, thanks for checking in. I haven't seen the guestbook since last week, so I'm really looking forward to taking a peek!
Love,
Mark
Friday, January 24, 2003 at 01:04 PM (CST)
With a couple of extended periods of relief Thursday and Friday, it began to appear as if victory was at hand. A bit of backsliding, however, has forced me to recognize that the Battle of the Bowel rages on.
Was actually feeling well enough yesterday to venture out unsupervised. And why not, the high temp was almost ten degrees. Mostly just a little drive that included a quest for comfort food. To that end, I cruised to the local Hardee's (no, I did not go looking for the one on 13th & Central for the KCK crowd) for a tasty Roast Beef sandwich!
Today's sounds good treat was my attempt to recreate Mom's cocoa and toast. It was my standard breakfast before starting the long walk to school. Believe it or not, heating chocolate milk in a pan and toasting bread was not beyond my capabilities and it tasted good too!
Maybe too much detail on my menu, but considering the other topic upon which I could provide detail, thought it best to stick with food. I'm really hoping to be past all this by the end of the weekend and make my trip to Chicago. That, however, will be a game day decision.
Hope all of you are well and have a great weekend. As for myself, looking forward to the Super Bowl (can I say that without giving the NFL money?) and whatever else "as tolerated" means. Thanks for checking in.
Love,
Mark
Saturday, January 25, 2003 at 03:39 PM (CST)
Hello...all is fairly quiet at the Dover household this afternoon so I thought I would take the opportunity to thank you for all your kind words of support and friendship. Please know that I read the entries every other day or so but I rarely seem to find the time with Max and Edward around to respond in kind.
A special thanks to Nancy and John Kennedy for the "Fairyland Brownies"...pure heaven. Of course, I am eating most of them so while Mark is looking a bit more svelte these days, I am trying to stay reasonably plump!
Also, as soon as I figure it out (don't hold your collective breath) I am going to try to put some pictures of the boys on the Website. I don't have the gift of prose like Mark, but I am pretty proficient with the camera...I will get some up for your amusement in the very near future...they are too funny. We are going to purchase our first pet tomorrow...a turtle who has already been named Bruce...don't know, don't care...it makes Max smile and that is the whole point. I think we got off pretty easy in the pet department so I am not complaining.
Thank you again for checking in and for all of your prayers and good thoughts.
Michelle
Saturday, January 25, 2003 at 04:28 PM (CST)
Saturday afternoon and progress continues. Not exactly over the hump, but going in the right direction. Have opted out of the Chicago trip on Monday that rumor has it many thought would fall into the "dumb" category.
At a minimum, my hope is to get back in to the office on Monday and try not to get in the way of the many colleagues stepping up to the plate for me in my absence. That's just the way it is at SHB.
Looking forward to some Chinese take-out tonight since both Michelle and I are having the same craving for it. Then will try and sit back, stay comfortable, and watch the Super Bowl. Hope you all can do the same and have a great weekend! Thanks for checking in.
Love,
Mark
Monday, January 27, 2003 at 11:01 PM (CST)
If asked about the things I thought I'd never do prior to my diagnosis, surely one of them would have been "keep a journal of my trips to the bathroom." As I sit here this evening flipping through the pages, best I can report is that significant progress has been made. No more dehydration or constant feeling of being bloated, which is a good thing.
One lesson from this now 10 day old adventure is that I will never, ever, ever, ever make fun of anyone, old or not, whose favorite topic of conversation is their irregularity. Cuz if you ain't regular, you ain't s***. OK, enough of that.
On the upside, the Chinese food was fantastic. In fact, eating is generally pretty normal and as instructed I'm keeping my fluid intake high. I've even discovered a tasty new mixed drink (no I have not sold out to the distillers), orange juice and seven-up.
One potential disaster, however, Saturday night. At around 9:30 p.m. just when you think all is quiet, the smoke alarm in Edward's room started that annoying change my battery beep. He was all hooked up for his night feed and we really didn't want to disturb him. The smoke alarm, however was in the highest part of the vaulted ceiling and my 6-foot ladder didn't reach. Then came my stroke of genius.
If we took the activity table out of Max's room and put the ladder on it, problem solved. Well after both of us ran up and down the ladder, the table held, the battery was changed and we could all go to bed. We won't be winning any safety engineering awards, but all's well that ends well.
Sunday was quiet with our own little Super Bowl party. Just Michelle, Max, Ed, and Cori. Only Cori and I made it to the second half. Not your typical Super Bowl party experience, but I enjoyed it as well as any other. I did discover something new about the game, they play four quarters!
Monday now, and for some reason a little trouble getting going. I made it downtown in the afternoon and made pretty good progress on things. Still eating small amounts just more frequently and am right this very moment rediscovering the joy of the Oreo. Of course, they got nothin on Jenny Duncan's (Tom's wife) snickerdoodles, which as they began to dwindle I even started to hide!
My daily routine still includes the injections I give myself and now includes one of the pills we tried along the way. It appears as if this combination may do the trick. I still seek, however, total victory! Will see the doctor tomorrow and have blood work done. The next chemo week is still two weeks away and begins February 10. Keep your snow shovels handy!
Thanks for checking in.
Love,
Mark
Wednesday, January 29, 2003 at 10:32 PM (CST)
Strike up the band, VD-Day has arrived! My battle with the Big D, however, did not end without one final skirmish. It occurred Tuesday afternoon after my visit with the doctor for blood work and further consultation.
Based on the progress of the previous 48 hours, Dr. Belt was confident I was over the hump. He said to stop the injections and go back to the pills for future episodes (if any), which made me just a tad bit insecure (the first sign I was becoming an anti-diarrheal junky). I got over it, gave my blood, and headed off to lunch with David Hardy.
Sensitive to my GI issues, David agreed that the usual Mexican food fix was probably not a good idea. Instead, he thought we should try a little joint in NKC known for its chili! Of course, I didn't have to order chili. I also could have passed on the deep-fried pork tenderloin. My mental compromise was simply not to finish either one. I ate enough to know, however, that chemo or no chemo, with that lunch order diarrhea was inevitable.
So I sat cursing myself Tuesday afternoon and early evening. Then I had the bright idea of reading the nutrition book I received during my initial visit to Dr. Belt's office. It was one of about 15 little books all new patients receive in their handy little canvas "I'm a cancer patient" tote bag. Shockingly, fried foods, spicy foods, and beans all made the DO NOT eat list.
On the bright side, many of the foods I needed to be eating were handy and I began eating and willing myself to regularity. I'd had enough. A man's ass can only take so many whoopins. And in the end, everything came together and I really think the problem is solved.
Another new twist, however, also developed on Tuesday. The Dr.'s office called to say my potassium was way too low and that I needed to start taking a supplement that same day. I dutifully picked up the prescription within an hour of the call and began taking these humongous pills. Got three down Tuesday, three today, and I think they are making a great difference in how I'm feeling generally. I also threw down three bananas, some OJ, and hope to get it back up before it's rechecked on Thursday.
And now for the hair. Monday night my scalp began to hurt and Tuesday I was able pull large amounts of hair out by running my fingers through my hair and gently grasping. So, this morning Max and I went to the biker barber shop in Parkville where he got his usual (a number two) and I got the number one. A bit worried to get a look at my scalp after all these years, and was expecting to see the bumps and knots of life as the seventh of seven. In reality, not too bad. Very stylish as several of my friends have pointed out. Now we'll just see if it goes all the way.
Will get my blood work done again tomorrow and we'll see how it's doing, especially the potassium. Then, blood work one more time next week and chemo the week of February 10. Life marches on, thanks for checking in.
Love,
Mark
Saturday, February 1, 2003 5:10 PM CST
Finally, the chance to write a journal entry that does not revolve around the big D. Thursday, Friday, and Saturday have all been relatively "normal." And while the experience has left its mark, nothing I can't grin and bear for a couple of days.
The recheck of my potassium level was fine. I've even been allowed to cut back from three giant pills per day to two a day. A regularly scheduled blood letting on Monday and that should be it until chemo starts again on Monday the 10th.
It felt good to be back in the office for most of Thursday and Friday to see friends and shuffle a few papers around. I never realized how fast everyday life moves until I was unable to keep up. Really hoping that next week is full steam ahead as something else I discovered is that I really like what I do at SHB and feel a renewed sense of pride and honor in the way we practice law there.
Friday evening Cori and I along with one of her friends and her dad went to dinner in Westport. The girls also did some shopping for dresses for the upcoming father daughter dance that St. Theresa's is sponsoring February 9th. Since it's my first, I'll be checking with resident expert in the art of father daughter dances, Dave Dover (father of four daughters the youngest now in college).
Aunt Mary Beth came over today to watch the kids, which allowed Michelle and I to go to lunch in Parkville and then off to do errands for me and a hair appointment for Michelle (something about Max and a comment about snow may have prompted this one). Tomorrow hoping to make it to 9:00 a.m. Mass at St. Peter's and then in to the office for some organization time (just moved into a new office that hadn't seen a lot of work done in it for some time, so I have to kind of break it in).
Next week should also bring my first out-of-town travel since going to MD Anderson in Houston New Year's Eve. Going to Milwaukee to see my friends/clients at Miller Brewing Company. Always something I look forward to, especially this time since I discovered this evening that probably for the first time ever I have beer in my fridge that is out of date! Finding a fresh one shouldn't be a problem in Milwaukee.
Finally, in an earlier entry I promised a brief history of how I came to be in this mess. This journal only covers from about January 1 forward. The story really begins in November of 2002 and since my sister LuAnn thinks it would be a good idea, my next entry will provide the story from what got me to the doctor in the first place to January 1.
Still sporting a number one (a/k/a/ a high and tight) without any bald spots (something that distinguishes me from others choosing this style). It may well be that I was only going to thin out, but still I'm enjoying the new look and will figure out how to get a picture on this site sometime soon. That's all for now and thanks for checking in.
Love,
Mark
Thursday, February 6, 2003 2:48 AM CST
The week is moving by quickly and as you can see from the time of this entry, I've fallen back into some old habits. Specifically, falling asleep watching TV after polishing off a bowl of ice cream, then waking up to go to bed. All is still quiet on the Southern front and Monday's blood work was all within acceptable limits.
As a result, I made my trip to Milwaukee and had a wonderful time. I got to travel with my very first SHB mentor, Roger Geary, and went to see the Bucks play at the Bradley Center after our meeting/visiting with friends at Miller. We even enjoyed some exceptionally fresh Miller Lite!
I'm now in full bulk-up mode and have been successful in putting on most of the weight I lost after round one. I'm hoping to keep it on this time and achieve that near Nirvana state of fat and bald. Still sporting the buzz cut, but losing nubs to the point that shaving it off may become a good option. Anyway, we have some digital photos ready to post once I get the nerve up to put them on here.
In other news, Edward had to have his feeding tube changed as the original was beginning to show signs of wear and tear after six months. A rather painful experience for him since it could not be fully deflated and had to be yanked out, which sometimes happens. Michelle and Ed have both recovered well from the experience.
Max had an exciting day at school, which featured him biting one of his little friends. Of course, the other kid poked him first, which clearly makes this a case of self-defense. We're just chalking this one up to good old-fashioned preschool justice.
Looking ahead, the beginning of round two on Monday is looming large. My plan is to thoroughly enjoy the next four days and hope that chemo week will be uneventful. Before all that, however, we have some important business to take care of. First of all, we're celebrating The Amazing Mr. Ed's second birthday on Saturday night instead of on the date (2-13). And of course, Sunday night I'll be doing my best not to embarrass Cori at our first father-daughter dance.
As for the pre-January 1 journal entry, I did not forget. Given the hour, however, I'm opting to do it this weekend as the final journal entry prior to the next round of chemo. As some of you know, this all started back on election night 2002, but the journal really only got going (thanks to Lisa Lukaszewski) in early January. My plan is to get it posted Saturday morning in time to enjoy Spongebob Squarepants uninterrupted.
Thanks for checking in and thanks for the Guestbook entries. I really enjoy reading them and will someday be responding to each one. Finally, thanks to everyone offering rides next week (I'll be calling soon), to Lori McGroder for my office snack basket, and to my friends at Liles Gavin in Jacksonville for the gigantic ham, which has done more for my bulking-up program than probably anything else.
Love,
Mark
Saturday, February 8, 2003 2:36 PM CST
No symptoms or new side-effects to report on, so this will be a good time to post the pre-January story of how we came to be in this mess. Still losing nubs at a pretty good clip, but have yet to break out the razor. And as fate would have it, the dark ones seem to want to jump out first leaving behind fields of grey.
Also, a quick Maximum story before I get started. It seems that Max is getting more of an education than we expected from a school called Oak Hill Day School. Last night he was in a rather playful mood and really wired. When his mother had the nerve to tell him no, his response was a very KCK like "you want a piece of me!" As the man of the house I of course felt compelled to intercede. My strategy was to give him a bit of his own medicine, so I asked him if he wanted a piece me (still trying to keep a straight face). His response, "bring it up (sic) old man!"
He quickly corrected himself and spent the rest of the night delighting himself with his new attitude while alternating between "bring it on old man" or "old girl" and the "you want a piece of me" routine. It was hysterical.
And now for a quick and dirty guide to how this whole thing got started. Back on election night 2002, I stayed up late watching the returns roll in on a relatively historic evening. Missouri, of course, had a very tight race for the Senate, which gave it a true local flavor. Throughout the evening I snacked on pizza, left-over Halloween candy, and beer (yes, Miller Lite). Not surprisingly, Wednesday morning I had a doozy of a stomach ache (we're talking about a LOT of left-over candy bars).
The pain hung around long enough that I went to see my GP doctor. After hearing my election night watch party story, he prescribed an antacid and said the pain should stop in a couple of days, which it did. During my visit he also drew some blood since it had been about year since my last physical. Based on the results of the blood work, Dr. DiBernardo thought I should have an ultrasound to check for gall stones.
The sonogram was scheduled for 9:00 a.m. on Thursday November 21. Two very nice technicians said I'd be out of there in 10-15 minutes. 30 minutes later and a noticeable change in mood on the part of the technicians and I knew something was awry. Two hours later my doctor called me at work to express his concerns about the results. They found multiple lesions in my liver (some described as "quite large") and noted that my pancreas was enlarged.
He had already scheduled me for a CT scan on Friday, a bone scan on Monday, and a consultation with a GI doctor on Tuesday to discuss a biopsy. The CT scan took place on Friday, which delayed my departure for the firm's annual partnership meeting in Scottsdale, AZ (hey, I didn't feel sick and had signed up for a hot air balloon ride). Monday morning it was back to what was quickly becoming an ugly reality.
The CT scan so concerned Dr. DiBernardo that he recommended I be admitted to the hospital, have my bone scan there, and consult with an oncologist. Since it was the Monday of Thanksgiving week, I agreed to be admitted to NKC that day since that would move things along more quickly. After a few snafus, which included me having to get a hall pass to leave the hospital (IV and all) to go have my bone scan where it was originally scheduled since the hospital just couldn't seem to work me in, I got settled in.
I stayed all night Monday night and met with an oncologist, Dr. Slovick, who ordered a biopsy of my liver. The biopsy (fine needle) took place Tuesday afternoon and featured an entry in-between two ribs. Rather painful immediately afterward, but nothing a little morphine couldn't help. We met again with Dr. Slovick before leaving the hospital Tuesday evening. He had rather grim news and advised that it appeared to be pancreatic cancer with metastasis to the liver. Median survival in the typical situation was a year from diagnosis. Happy Thanksgiving!
The diagnosis, however, presupposed a certain cell type that 95% of pancreatic cancers are made up of. There was an outside chance I might fall into the 5%, but further testing of the pathology was necessary. On the Friday after Thanksgiving, Dr. Slovick called from his mother's house in Philly to give us the good news that indeed I fell into the small minority of pancreatic cancer cases that did not have the typical cell type. The diagnosis was a "well differentiated neuroendocrine cancer primary to the pancreas with mets to the liver." Better, but still not great. The best thing about my type of cancer is that it's slow growing and in the words of one pathologist "well-behaved."
After confirming the diagnosis/pathology with the help of some our expert witnesses and another pathologist in KC, we had to come up with a treatment plan. We were also determined to go to one of the major cancer centers as part of our search for answers. Because I wanted my care to be at St Luke's in KC, I began to see another oncologist in KC, Dr. Robert Belt. Thanks to a call from my partner and cancer survivor Pat McLarney, Dr. Belt agreed to see me right away and we began discussing a plan. At first, chemo was not thought to be a good option. We discussed embolizing my liver (cutting off its blood supply to kill the tumors) and using octreotide (a synthetic hormone) to hopefully shrink the tumors.
Then on December 30 we went to MD Anderson Cancer Center in Houston. This visit was facilitated by another pancreatic cancer patient and friend of my partner David Thorne. With his help and guidance, I got in to see an oncologist there that specializes in GI cancers with an emphasis on neuroendocrine cancers. There is little doubt that MD Anderson is one of if not the best place to go for cancer treatment/diagnosis. I was told to be prepared to stay 7-10 days.
We (Michelle and I) first met with a Fellow (it is a teaching hospital) who gave us that Doogie Howser feeling. Then we met with Dr. Ajani who was no nonsense and not big on small talk. Without hesitation, he recommended chemo. This, of course, caught us off guard since up until that point we were being told that chemo was not a good option. He wrote out a letter for me to take with me explaining his plan and even provided a sample of what the orders would look like. Since the only thing left to do was start treatment, and since I was not ready to commit to the chemo, our visit was a short one and we were back home New Year's Eve.
The trick now was to get a consensus. I e-mailed Dr. Ajani with a question the gist of which was why did he recommend chemo while everyone else up to that point did not think it was a good option. On the KC end, I worried about how Dr. Belt (generally regarded as one of the best oncologists in KC) would react to the MD Anderson suggestion. It all came together on Monday January 6, when Dr. Belt, who was on vacation the week before, called me at home to say he had no problem with trying the chemo route first. This was followed by a response from MD Anderson to the effect that their suggestion was based on their experience with their patients. That was good enough for me and chemo began January 13, 2003.
While in Houston, Dr. Ajani was very encouraging in that he mentioned that in about 50% of their cases the tumors shrank, while in about 20% of the time they stopped them from growing, and that even in a rare 5% of the time the cancer disappeared. The letter he wrote Dr. Belt, however, was a little less optimistic, but I'm holding out for being part of that 5% group.
That's pretty much it for the pre-January 1 history of this journey. The trip to Houston was made much easier by my friend and partner Steve Selsberg who opened his home to us and was a most gracious host. The whirlwind of Thanksgiving week could not have been weathered without a little help from my friends and family. From David's mad dash to take me to the hospital Monday morning to Marty and Kari's kindness and concern in making sure I got settled in, to sister Lu and brothers John, Bob, Dave, and Vince's support (and Ginger too), I'm left once again with nothing more than the chance to say thank you.
I sometimes have a hard time believing that this is really happening, but it is. And while most of the time I feel secure and confident in our ability to win this fight, there are still those darker moments when I worry that all is lost. Whatever the outcome, I will always be thankful and in awe of the wonderful people whose paths I've crossed and with whom I've a shared a good time, a good laugh, or even better the chance to make someone else's life a little better.
This is getting a bit long and it's getting a bit late. While I started at 2:36 p.m., it's now 11:45. Ed's party was a rousing success. He partied till 9:30, which is a good two and a half hours past his usual bedtime! And Michelle's lasagna was once again fantastic. Everyone is sleeping now and I look forward to joining them. Thanks for checking in and I'll be updating again early next week, which is once again a chemo week.
Love,
Mark
Wednesday, February 12, 2003 2:22 PM CST
Treatment number three for this week is behind us. So far so good. The treatments begin around 11:00 and I'm usually out by 12:30 or so. Then back to the office for a little nap and some alone time with my dear friend Ativan.
I have finally added a photo of the new do. The caption reads January 29, which besides being one of my favorite days of the year, is the day Max and I got buzzed. The picture was not taken until February 5 after some of the nubs were beginning to fall.
That trend has continued and I find myself with some bald patches and mostly grey hair since the dark ones seem to be in the biggest hurry to jump ship. This once again finds me at a decision point. It's time to either shave it all off or buy a Porsche. Since a Porsche is not exactly in the budget, it's time for the clean shave. And now that we have the photo thing down, the Mr. Clean version should be up shortly.
Well, Ed officially turns two tomorrow the 13th. Quite an accomplishment in and of itself. On top of that, however, he has made great progress in therapy including a few steps in the pool and on land in a special walker. He also sat unassisted for a minute and 5 seconds. We anticipate his progress will only accelerate when he starts "school." Beginning the week of the 17th he's approved for three days a week at TLC (Therapeutic Learning Center at 31st and Main). Perhaps all those prayers for me and the family are getting the job done. Please, keep it coming!
Sunday's father-daughter dance at Union turned out to be quite an affair. It was sponsored by Cori's school (St. Theresa's) and the theme was famous couples, which brought out quite an array of costumes from Beauty and the Beast to Hugh Hefner and a Bunny (nice job dad). Cori and I anticipated that there would be lots of gangsters given the location, so we went as Mr. and Mrs. Elliott Ness to keep an eye on things. All in all a great night.
Three days down and two to go. Last round it turned out that day four (Thursday) started my downward spiral to the bowl. Being forewarned, however, means being forearmed. We'll just keep our fingers crossed that the next few days will go as smoothly as the first three. Stay tuned.
Thanks for checking in and Happy Valentine's Day!
Love,
Mark
Saturday, February 15, 2003 9:06 AM CST
Saturday morning and delighted to report that all is well! The pre-chemo drugs seem to have done their stuff during the week and now it's up to me to follow through with the pills I've been prescribed to take over the next three days. Seems strange to be taking so many pills while feeling good, but as Dr. Belt has so gently explained before, "that's why you're a lawyer."
Friday brought an end to the nub era and I can now say I've officially been "Murphed." Shaved the old bean with a little help from Max and Michelle and am now wondering what you have to do to get that wonderful shine. Picture to follow.
A cold rainy/snowy day here in KC, which makes staying close to home that much easier. And besides, since two of the three meds caution against driving, probably not a bad idea anyway. Hopefully, all will remain quiet for the next three days and we can have a few weeks of normalcy before the scans (now scheduled for March 5) and follow-up with Dr. Belt (March 10) to see just how good we did.
Thanks again for all the good thoughts and prayers. It remains overwhelming and a great source of strength. I have no doubt in the power of prayer and know that it all helps, so please feel free to continue. We still have a ways to go and much to learn. And a special thanks to this week's All-Star Drivers: Michelle and Ed, Pam Downs, Tetta Whipple, Madeleine "Never Lost" McDonough, Roger Geary and Brother Dave (of course, being a relative I had to buy him lunch).
Finally, congratulations to Emily and Yoric on their Valentine's Day wedding. Wish we could have been there for some fun in the Hawaiian sun!
Well time for some more Disney videos (Fantasia is Max's pick for the day), which ain't half bad after a little Ativan. Michelle is out on a few errands and, hopefully, enjoying a few minutes away from this crazy place we call home. Thanks for checking in and have a great weekend.
Love,
Mark
Wednesday, February 19, 2003 4:57 PM CST
Five days post-chemo and happy to report that all is relatively quiet. A great relief and pleasant surprise, but still always waiting for that other shoe to drop. Had what turned out to be a false alarm on Tuesday after having lunch with an unnamed retired partner who insisted on Mexican food. In all fairness, however, I sort of knew the temporary set-back of Tuesday was coming even before digging in to Ninfa's tamales. They were good as ever and since all's well that ends well, I can say it was worth it.
Feeling a bit tired/dazed from time to time, but not so out of it that I can't function. Have been in the office all week and looking forward to the next few weeks since things can only get better as the drugs work their way out of my system. And hopefully, they can do their important business during the trip. Time will tell.
The big news this week, however, is that Edward went to his first day of school! He now goes to the Therapeutic Learning Center (31st & Main) in KC three days a week, which means Michelle is not in constant taxi mode going from one therapy to the next and having to stay for each session. There are even first day of school pictures that will be added to the photo gallery once we get them back.
As for other photos, we managed here to post a picture of the new Mr. Clean look. Take a look if you dare.
Finally, hoping not to have too much to report in the way of health issues over the next few weeks, but will continue to post updates. There is also one other matter that must be reported on, i.e., the rumor that I will be riding in a Mardi Gras float later this month. Well, it's true. Thanks to our New Orleans office and some happy coincidences concerning timing, I will be experiencing the thrill of Carnival first-hand. Obviously, there will be no pictures of that! So, you can understand that the urgency and importance of recovering from the latest round couldn't be greater.
That's all for now and thanks for your continued support, prayers, and concern. Take care.
Love,
Mark
Sunday, February 23, 2003 5:32 PM CST
Sunday evening and still relatively smooth sailing. In all honesty, there have been a few intermittent relapses reminiscent of the last round, but not enough to chronicle here. As a matter of fact, not even enough to have to break out the old potty journal!
I go in tomorrow for some routine blood work, but no other appointments for the week. More routine blood work on March 3rd, then the appointments that really matter arrive. March 5 is the CT scan and March 10 the appointment with Dr. Belt in KC to discuss the results. Still working on a date for a return visit to MD Anderson in Houston to discuss results/options with them.
Trying to keep these dates in the back of my mind since at this point all I could really do is worry and obsess about something over which I have no control. My preference is to simply refer to this follow-up as a chance to see how much, not if, good we've done. Whatever the results, all that it really means is that we'll be at another "decision point." In other words, based on the results a decision will be made about what to do next. My hope, of course, is that the decision will simply be where to have a victory party! My top choice for that is the Sports Page in KCK, if they'll have us.
In other news, have enjoyed being back in the office. Was here all last week and will be in this week as well with the exception of a quick business trip to New Orleans on Friday. Plan on resting up for what could be a grueling couple of days. Dinner at Dave and Mary Beth's last night and a viewing of the Clay and Laura wedding video. We used it as prep for Max who will be in cousin Dana's wedding this summer and Ed used it as an excuse to party. The guy is an animal, stayed up till 9:30 happy as a clam (does anyone know why clams are so happy?). Max and Ed go back to "school" tomorrow, assuming the 2 inch snowfall we're getting today does not set off the usual widespread panic among school administrators causing them to call off school, again.
That's all for now and sorry for the delay in updating. Thanks for checking in and for your continued support, prayers, and love.
Love,
Mark
Friday, February 28, 2003 0:14 AM CST
Late Thursday night and all systems are still a go for tomorrow's trip. As is often the case when preparing to leave town, however, a small glitch or two on the homefront.
First, another failed attempt at being the family handyman. It seems that the modern toilet often contains a handle attached to a "flapper" (don't be impressed with this attempt at using handyman lingo even Max knows this one) that once broken requires the removal of certain parts from the interior of the tank. Now we've all lifted that lid to jiggle a handle or two somewhere along the way, but this in no way prepares one for changing the appropriate parts regardless of the "easy to install" language on the box that the Home Depot guy told Michelle was just what we needed.
I dug in to my task with Max and his tools at my side. Michelle had gone to dinner with her friend Susan Green and when she arrived home she found me on the couch watching Leno and the tank on the bathroom floor. I had surrendered once again at the foot of a porcelain altar. Thankfully my truly handy neighbor, Michael, got things put back together even before I got home this evening, which spared me the humiliation of having another man, not a plumber, put your potty back together in front of your helpless, pathetic eyes.
Fully functional bathrooms around every corner are always a good thing with a relatively newly trained 3 year old in the house. It is particularly important when he has a touch of the Big D. That's right, issue number two (no pun intended, really) is that Max had his own little battle with the Big D that we're hoping was a one timer. Even so, he'll be staying home with Mom tomorrow instead of going to school. So, there you have it, my wonderful sense of timing, a broken toilet and a sick kid, must be time to go to Mardi Gras!
On the medical front, still relatively quiet. Monday's blood work showed a low platelet count. Platelets are apparently the things that help blood clot, so I've been advised not to sever any limbs or bleed if I can avoid it (something I always strive for) since it may be difficult to stop the bleeding. Have also encountered a new side-effect of the chemo drugs, mouth sores.
Actually, I only have one, but it is strategically located on the back part of my tongue's underside, which makes it a constant source of irritation and pain. Sort of like a paper cut that won't stop hurting. Extra Strength Tylenol didn't touch it so I called in to the doctor's office for help/advice. I was told they would phone in a prescription for "Magic Mouthwash." I chuckled at the cute name, which I assumed was a nickname, until the prescription was filled, and damned if the bottle doesn't say "Magic Mouthwash." Can't wait for the luggage screeners to get a load of that one. Having tried it a few times now, the only magic I can detect is how the numbing effect disappears shortly after "rinsing and spitting."
Finally, and at the risk of overdoing the bathroom humor, I must disclose another side-effect that I've not so silently hidden from most of you. During the week or so after chemo I had some cramping and bloating similar to what I experienced the first time around. The end result (pun intended) this time, however, a rather constant barrage of flatulence that would have shamed anyone sitting around the camp fire in Blazing Saddles. It sent Michelle packing into the guest room on more than one occasion and even drew Max's criticism. I would like to thank those poor souls that wandered into my office at the wrong time for not blurting out "what's that stench" and running for the door. I have dubbed this new phenomena (which is over in case you were worried about inviting me into your home) Dry Diarrhea or double D for short. Please forgive me if I've gone into the too much information zone, but I figured what the hell, we're all friends here.
Getting late and I have an early flight. Hope you all have a great weekend and I will prepare my carefully edited Mardi Gras report for posting on Monday night. And, yes, I remember the old adage, moderation in all things, which I will practice in all things, except for the distribution of beads. Take care and thanks for checking in. As they often say in New Orleans during Carnival, let the good times roll (they, however, say it in French and I've lost my translation, Cori can you help?).
Love,
Mark
Tuesday, March 4, 2003 9:34 PM CST
Wow! That pretty much sums up the weekend in New Orleans and my first Mardi Gras. I left Friday morning arriving in NO just in time to attend the Fat Banker's luncheon at Arnaud's on Bourbon street. Of course, no bankers attended. That would make too much sense, this is after all New Orleans during Mardi Gras.
The FB lunch is actually a warm-up for the Krewe of Tucks, which is the Krewe whose parade I would in participate in on Saturday afternoon. Primarily just a bunch of lawyers that refuse to abandon the seductive fun of Carnival. Dinner that night at Brightson's, a perennial top NO restaurant and favorite of my unofficial tour guide, friend, and partner, Bob Grossman. A fantastic meal followed by a NO style adventure in driving as we attempted to return to our hotel in the French Quarter shortly after a parade had passed by.
Saturday's main event, the parade. Our official guide, partner in the NO office, and friend, Charles Seeman, picked us up at the hotel and we began our journey to the parade staging area in the Uptown area. This, of course, involved stopping at a local grocery store for provisions of the liquid variety and some Snickers Ice Cream bars (it sounded good at the time). This stop took quite some time due to long lines that were due to people not in any particular hurry to check you out so you could have a good time while they stayed at work. The attitude of the Big Easy, however, is part of its charm, and is both charming and maddening for you type A people. I, however, felt right at home.
Now back to the parade. The first order of business was unpacking the beads and other trinkets we would be bestowing on parade watchers that had been staking out spots on the front row since the night before. The parade, in typical NO style, started about an hour late (2:00 p.m.). No particular reason, it just did. It went on for three hours as we made our way from the Uptown area back to the Quarter. Along the way, constant screaming as we passed by. During stops people would come right up to the float and start asking for the good stuff. Some used the traditional call of "hey Mister, throw me something" and most were very gracious and polite. This was, however, Mardi Gras and the best way to describe the float experience is having a group of people (sometimes 20 deep) scream at you non-stop for three hours. And in spite of our best efforts, we had left-over beads at the end of a long day of heaving (no, not that type of heaving). And yes there was a small amount of decadent behavior involving attempts to get the "big balls," i.e. the strings with large Christmas ornament size "beads." Nothing further need/should be said. As for any comments on this in the Guestbook, please remember this is not an age restricted site!
Sunday was for sleeping in and eating. After lunch with Bob at another one of his local favorites, we went to the Fairgrounds to watch a couple of horse races. It also provided an opportunity to meet with my friend and law school classmate, Abram McGull, who just recently moved "home" to NO where he works as an asst. US Attorney. That pretty much capped off one damn fine weekend. A special thanks to Michelle for encouraging me to go and not giving me too hard of a time about it.
Ash Wednesday puts an end to Mardi Gras and will provide something of a trip back to reality. My day will start with a CT scan at 7:00 a.m., assuming the sleet and ice we're getting doesn't somehow get in the way. My plan is to ask not to see any monitors or receive oral impressions from the person performing the scan. I'm choosing to stay fat, dumb, bald, and happy at least until the meeting with Dr. Belt on March 10. I'll take my old scans with me so the radiologist that reads my new scans can compare them to the old scans to see just how good we did.
Still feeling "normal" and no side-effects or symptoms to speak of. It's even safe to show up in my office unannounced! Catching up at work and pretty much up to full speed, which it turns out to be a good thing as various matters are "heating up." Will provide another update this weekend, but don't expect to have any big news until Monday the 10th. Will do my best to get something on here as soon as possible that day, but depending on how things go it may be Tuesday. As always, thanks for checking in and please keep your good thoughts, karma, and prayers coming this way, particularly now that we're in crunch time!
Love,
Mark
Monday, March 10, 2003 9:51 PM CST
We met with Dr. Belt today as scheduled. Although the meeting was early in the morning and I've sat next to a computer all day today, I've struggled with how to start this entry all day. And while I'm still at a bit of a loss as to where things are, the news was not bad nor was it particularly good. I'd have to characterize it as neutral with the possibility of getting better. Allow me to explain.
After sorting through what is now becoming quite a collection of films, Dr. Belt placed a November 21, 2001 film next to a March 5, 2003 film. They were of roughly the same view and showed roughly the same thing. In other words, no particular shrinkage, growth, or further spread. There is still a gaggle of tumors on the right side of my liver including one big, bad one from the heavyweight division that measures 6 x 6cm. I call him Leroy. The pancreas is similarly unchanged in that it still appears enlarged.
Dr. Belt explained, however, that just as my tumors are notorious for their slow growth, they can be equally sloth-like in their demise. Consequently, blood was drawn to run some tests to look for specific markers of the tumors' viability. If the chemo has done some damage that has simply not been translated into tumor reduction, the levels of certain markers will be lowered indicating that the chemo put a whoopin on the tumors in addition to me. Those results will not be available until Wednesday or possibly Thursday, which leads me to my next point.
I am scheduled to return to M.D. Anderson in Houston for a follow-up appointment with Dr. Ajani on Thursday afternoon. I'm hoping that all the results will be back by then, but out of an abundance of caution have notified Ajani's office that they may not be to see if they want to reschedule in order to have everything in before my consultation. I'm assuming it won't make a difference and plan on being in Houston this week for the appointment.
After this morning's appointment, I went to work at Shook and Michelle went back to one of her part-time jobs as the kids' school bus driver. Everything seemed quite normal. I worked, had lunch, and through it all felt quite well. The doctor keeps asking about pain or other symptoms, which are still non-existent. It's getting harder, however, to forget that those basturds (Leroy and company) are still in there doing whatever it is tumors do to pass the day.
Hopefully, the blood work will show results not yet visible on a scan. Regardless, it could not have been a pleasant experience for the tumors and I have to believe that we've done some good in addition to ruining Leroy's day with a chemo cocktail. I would, of course, be lying if I tried to say that I'm not just a tad bit disappointed. I would have loved to have seen dramatic visual evidence that progress has been made, but am not particularly surprised that none can be seen at this time.
By the end of the week I hope to have a good idea of what to do next. I'll be back again then to update the journal, but in the meantime please know how thankful I am to have had your support, love, and prayers to help get through this up to this point. The fight continues, however, so keep up the good thoughts, karma, and prayers. Patience is one of the few virtues that I have been blessed with and it appears as if that will be tested as well. Thanks for checking in.
Love,
Mark
Thursday, March 13, 2003 5:59 PM CST
An update from Houston. First things first, however. Last night my partner and host Steve Selsberg attended the Houston Rockets and LA Clippers basketball game. It was a great overtime win for the Rockets, but the most entertaining part of the evening was sitting next Yao Ming's parents! Even better was watching Steve and Mr. Yao high fiving as the Rockets mounted their comeback win. He spoke no English and Steve speaks no Chinese, but the international sign of celebration bonded the two for the evening.
That's it from Houston. Oh, wait a minute, I did meet once again with Dr. Ajani at M.D.Anderson this afternoon. He and his helpers agree that there has been no change in the tumors' appearance, but they describe this condition as "stable." I like that. He also confirmed that just as my particular brand of tumor is slow growing, so too is it slow to die. Bottom line, his recommendation is another go with chemo. He signed a handwritten note to that effect, which I will forward on to Dr. Belt in KC.
So, the battle continues. Another couple "chemo weeks" followed by more scans and a return to Houston. I don't even bother trying to "read" Dr. Ajani, he's simply a quiet man that gets right to the point. I'm happy, however, that he wants to keep after Leroy and company and am hopeful that the results may just be slow in showing up. I've always been a bit of a late bloomer, no reason for that to change now.
Thanks for checking in and your continued support. Not sure when we'll get started again, but expect it to be soon. It will take another 8 weeks to get through this round and another week or two after that for the scans and consultations. Oh joy. Say an extra prayer or two that the Big D stays away this time.
Love,
Mark
Thursday, March 20, 2003 1:30 PM CST
After the Houston consultation and gathering more info here in KC, looks like chemo week begins March 24. Another Monday through Friday regimen, followed by 3 weeks off then another M-F session beginning April 21. After the second round, more scans, consultations, and another decision point sometime mid-May. Not exactly something to look forward to, but just today I received some good news relevant to how we're doing.
As you may recall, my scans simply showed that everything was stable, i.e. no change. The blood work, however, is beginning to come back and shows that we just may be doing some good. Specifically, some specialized tests were ordered to look at levels of certain proteins that are supposed to tell us if the tumors have been effected by the chemo. Not to get too scientific here, but the specific protein I'm talking about is chromogratin A. From February 10 to March 10 the levels dropped nearly ten-fold from 4000+ to 400+! So, we'll call this unqualified good news. More results are due in tomorrow and I've put in an e-mail to M.D.Anderson to tell them about the results and see just how good they think this news is.
Not much else to report since last Thursday. Max had his Spring musical at school and demonstrated his ability to resist peer pressure and not sing just because the other kids were doing it. He did pipe up during the big finale in between games of peek-a-boo with me sitting in the audience. Edward was having none of it, and kept his mom pacing the hall just outside the auditorium, thereby depriving her of her front row seat for all the action.
I'll update you on the latest blood work over the weekend as we prepare for another chemo week. Hoping that this one goes as smoothly possible and that I won't have to make you all suffer through more bathroom humor. Look out Leroy, here comes the poison!
Thanks for checking in and take care.
Love,
Mark
Monday, March 24, 2003 10:38 PM CST
And so it begins again. Treatment got underway today with a trifecta of chemo drugs. Also had a drive-by visit with Dr. Belt as he passed through the treatment room (hardly an "office visit," should I ask for a refund of my copay?). We briefly discussed the latest blood work (faxed in today) that didn't really show much change unlike the results from last Thursday. Disappointing, yes, but regardless, we shall forge ahead with this round and see where we are in 8 weeks.
As for good news, I'm getting reacquainted with my old friend Ativan. Once that hits the old system through my port, they could put anti-freeze in the next syringe and I really wouldn't care. Makes driving a bit iffy, but after getting dropped off today by Pam Downs (thanks, Pam)Michelle and her mini-van/taxi came to the rescue with Ed and Max in tow to get me home.
Late Monday night right now and all is well. Drinking my fluids and staving off any side-effects with some follow-up do-it-yourself Ativan that I have here at home. All of this week's appointments are at 3:00 p.m., which in effect allows me to work till it's time to go. Rides to the doctor's office will as usual be scrounged from my wonderfully generous coworkers. Should finish up around 4:30 each day, and will get a ride back downtown to get the car and eventually make the trip back to Parkville.
Don't worry, I plan on resting or taking a short nap before attempting the drive home. Brother Dave is in charge of pick-up duty and rumor has it that cousins Beth and J.R. may soon be enlisted for their help in getting me back downtown after treatment. But then again there is that small matter of the "cousins' curse" as it relates to driving skill/ability/luck.
In any event, all is in place and ready to go for this round that I only hope will at least result in Leroy taking a few blows, knock downs, and maybe even a standing eight! I don't expect this battle to be a short one, but like you I hope and pray that the war on our television screens IS short and successful. Because I know what wonderful decent people all of you are, it's probably a pretty good assumption that the safe return of the men and women fighting overseas are at the top of your prayer lists, as they should be.
I sometimes feel as if I've already gotten more than my fair share of good thoughts, prayer, and kind words. I'll gladly accept more, but first things first, let's all concentrate on getting the war over with and our troops headed back home. Leroy is stable and will be suffering through his own "shock and awe" for the next eight weeks, which I hope is more than enough time for our troops to have things well in hand in Iraq. In the meantime, however, feel free to use the guestbook to put in the name of a loved one overseas so we can all send him or her more good thoughts, prayers, and wishes for a safe return.
Thanks for checking in and take care.
Love,
Mark
Wednesday, March 26, 2003 10:27 PM CST
Over the hump for this week with 3 treatments down and two to go. So far so good, but it was the fourth day of the first round last time that started my battle with the Big D. I really don't expect a repeat performance and believe that just having gone through it a couple times now, the fear of the unknown is gone and I feel better able to control how this will play out. Having said that, sure hope I'm not going to have to eat those words.
The 3 p.m. schedule is working great. I can pretty much put in a full day by getting in early and then heading out for treatment around 2:45. Today's lucky driver was my friend and partner David Thorne with the ride home provided by the fantastic duo of cousins J.R. and Beth Dover. They got me downtown in record time, back at the office by 4:15! So, couldn't resist practicing a little law upon my return. I think the Ativan may have been a plus, very creative thoughts were had this afternoon. (Just kidding if any clients are checking in).
Assuming everything stays together next week, I plan on taking a business trip to New Jersey, leaving Thursday and returning late Friday night. The following week will require a short trip to Boston. For you locals, some spare hands around dinner time would be greatly appreciated by Michelle, check with her first as I know that she wants the help, but doesn't like to ask.
Think I'll keep this one short since it is bedtime after all. Just finished my nightly bowl of ice cream to add to my impressive girth. Not sure what I'm building these reserves for, but they're building. Fat and bald, it just doesn't get any better than this! Thanks for checking in and let's all pray for some peace.
Love,
Mark
Saturday, March 29, 2003 1:13 PM CST
So far, an incredibly uneventful chemo week. Praise God and a toast to avoiding the porcelain altar. I have a three day regimen of anti-nausea drugs that takes me through Monday, but deep down feel that this round will be trouble free. I also have a feeling that all of your prayers, kind thoughts, and good karma have made this part of the trip a smooth ride. Thank you!
Laying low this weekend and looking forward to watching some more basketball. Dave and Mary Beth are coming over for this afternoon's games and I'm afraid that I'll be having to console/control Dave as he agonizes over the KU game. Myself, I've jumped on the Marquette bandwagon in honor of my friends in Milwaukee. Good thing the games have switched to daytime hours as I've not quite been able to stay up for those "late" games.
Looking forward to a "normal" week that includes a quick trip to NJ for a visit to the Middlesex County Courthouse. The following week another quick trip, this time Boston. In the interim, each Monday I'll have a weekly check of my blood counts. All in all, barring some unforeseen though not uncommon problems with energy levels and/or risks of infection related to blood counts, the next three weeks will hopefully be full steam ahead as we welcome Spring and, hopefully, say goodbye to the war.
Thanks for checking in and let's all keep praying for a sudden outbreak of peace!
Love,
Mark
Saturday, April 5, 2003 1:32 PM CST
Saturday afternoon and happy to report relative smooth sailing. No GI events/side-effects, just some tiredness and a sort of "out of it" sensation I call feeling a little Gumpish. I expect that to fade as the weekend goes by and that next week will be normal (whatever that means).
My trip to the Jersey shore was a professional success, but it proved what most every traveler knows -- travel is often a tiring hassle. I'm working on new packing strategies and may even break down and buy one of those little suitcases with wheels for next week's trip to Boston. Not sure why, but for some reason have always just assumed I'd look ridiculous pulling my bag around behind me. Oh well, who cares since I felt ridiculous asking the lawyer I was working with in NJ to help me carry my bag to the cab I took to the airport.
Preparing for the Final Four games complete with my brand new Marquette sweatshirt that arrived this week from Milwaukee. It was purchased by KU fanatic Chris Wittman as a gesture of his good sportsmanship (and desire to remain employed at Miller Brewing Co) after some good natured trash talking inside the legal department. As the office's sole KU fan, however, Monday could be pretty lonely regardless of the outcome.
In other Final Four news, there will be plenty of Dovers in New Orleans rooting for the heathen team (I've declared part of my support for Marquette to be based on holy war and expect to be fully backed by the Highberger family). Sister LuAnn was lucky enough to snag tickets from the NCAA mail-in lottery, while brothers Dave and John simply couldn't stay away and went to the black market for their tickets. John and Dave called from Bourbon street last night wondering why no one named Dover was allowed in the "Howl at the Moon" bar. I assumed all would be forgotten since my Mardi Gras trip, but there are PLENTY of other bars for them to patronize.
Our plan, complete with baby sitter, is to catch the game at a local sports bar. Not too picky, all that is required is a steak special and plenty of cold Miller Lite. Sounds like the bar and grill at the National Golf Club near our house qualifies, but not sure they allow Wyandotte County transplants into the main dining area yet. We'll see.
That's all for now. Thanks for checking in and your continued support, prayers, and caring. Let's also keep up all the good thoughts and prayers for our soldiers as they run their own Leroys out of Baghdad.
Love,
Mark
Tuesday, April 8, 2003 11:48 PM CDT
Tuesday evening and all remains calm. Had some routine blood work done on Monday and, again, all was fine with my "counts." And best of all, I have shaken off that Gumpish feeling although I'm having some strange cravings for shrimp, all kinds of it.
The trip to Boston is still a go and I leave tomorrow. Have yet to break down and go for the wheeled luggage, but that's mostly a function of not having time to shop for it. Due back to KC late Thursday night.
No reports from the Dovers that attended the Final Four, but I suspect that is mostly due to their depressed states of mind after the Jayhawk performance. I discovered that the trouble with jumping on bandwagons is that the ride can be painfully short (i.e., rooted for Marquette on Saturday then KS on Monday). Time now to get behind those amazing Royals! Of course, my support will ruin their perfect record.
Coming up, another visit to the doctor for blood work and a check-up scheduled for Monday the 14th. After that, chemo week begins on Monday the 21st. Then we wait 3 weeks, re-scan and repeat the specialized blood work, and see where we go from there. And just between you, me, and the fencepost, I'm really hoping that we see some solid signs of progress all around this time.
Well, time for bed. Thanks for checking in and for all of your good thoughts, prayers, and love.
Love,
Mark
Monday, April 14, 2003 0:26 AM CDT
All still going well with one notable exception (no, not the KS loss in New Orleans). Of all the pesky little problems to have at a time like this, I have a toothache! Just an old filling that probably needs a root canal as it is sensitive to cold and otherwise a pain in the butt. The problem, however, is complicated by the chemo as I was advised at the beginning to avoid any dental work during the process. You can probably guess what my first question to Dr. Belt will be later today at my appointment. Oh well, small potatoes in the grand scheme, but a problem in need of resolution none the less.
My appointment will also give me the opportunity to ask the doctor about a cough and sore throat that I've developed over the last couple of weeks. Probably the result of allergies since Spring is well under way here, but something to talk about anyway. We will also schedule my chemo appointments for the week of the 21st that I hope will be set-up like the last round, i.e., 3:00 p.m. appointments that let me enjoy the Ativan and then simply go home to wait and see what, if anything, happens next.
Inspired by a sale flyer from Kohl's, I have broken down and joined the swelling ranks of travelers with those nerdy roller bags. Should come in handy for my next trip, whenever it is. The trip to Boston last week went well even without a wheeled bag. Stayed close to the courthouse and really did not have time to venture out. I did try and partake of the local cuisine, but being born and raised in KCK have yet to develop a taste for seafood beyond Hy-Vee tuna salad and Mrs. Paul's fish (?) sticks that make their usual appearance during Lent.
We had wonderful weekend weather in KC that we took full advantage of. Friday I went to an all day partnership meeting on the Plaza that provided a great opportunity to see and visit with many of my wonderful partners from across the U.S. as well as from across the Pond. Work commitments required me to step outside for a few hours in the afternoon and work in the great outdoors (I really was working, most of the time anyway). After the neighborhood Easter egg hunt in the morning and a visit from our friends Jym and Joseph Fees, Saturday was Michelle's turn on the Plaza as she dined at JJ's with our friend Glenda (a/k/a Aunt G) while me and the boys played outside with the neighbors. Sunday, we spent the afternoon at Clay and Laura's house with Uncle Dave (fully recovered from New Orleans) Aunt Mary Beth, J.R., Beth, and Lisa, which gave Max and Ed some quality time with their cousins (including Clay and Laura's new puppy) as well as another Easter egg hunt.
Time to go to bed now and try to avoid falling back into my old habit of late night TV viewing. Hard to avoid the urge, however, to watch war news and am just delighted at how well things seem to be going "over there." Should be close to home the next couple of weeks with no travel plans until the week of the 28th. Thanks for checking in and for all of your continued support and prayers.
Love,
Mark
Saturday, April 19, 2003 1:03 AM CDT
Monday's visit to the doctor revealed a low white blood cell count that if not back up by the 21st may delay my next round of chemo. I am also now on an antibiotic to help clear what the doctor thought might be a sinus infection, which was causing my congestion and cough (both of which are better as of Friday). Further complicating matters is the need for a root canal that will also be hindered by the low white blood cell count. So, things have gotten a bit complicated and between the blood count issue and the need for the root canal, chemo may be pushed back a week.
All I can say is what a cruddy time to need a root canal. And need one I do. Sensitive to hot and cold now, making eating and/or drinking a sometimes painful experience. I do, however, have a prescription for a pain killer that I just filled this evening and hope that it can carry me until I can see the dentist that will do the root canal. The dentist I saw on Wednesday was a good looking fellow (bald and sporting a goatee) that I had never met before. My previous dentist has apparently moved on to greener pastures and is no longer with the group. I'm beginning to think it may have had something to do with his disturbing habit of saying "oops" a lot during delicate procedures. We'll see if the next one is any better.
This week also featured a spur of the moment trip to Milwaukee for work, which allowed me to try out my new suitbag with WHEELS! Yes, it's true, I've joined the nerdy masses that pull their personal items behind them all the while hoping it doesn't tip over thereby making one look like a fool. That said, it really was quite convenient and nothing to be ashamed of. Anyway, was gone Wednesday night, but still found traveling quite taxing even with the cool new suitbag. In bed and asleep by nine!
Perhaps this whole tooth thing might have a brightside. Since eating is fast becoming a painful adventure, I might actually lose some of the weight I put on to counteract the weight loss expected to occur during chemo. I remember once during law school a similar experience resulted in such a dramatic weight loss my actual weight and driver's license weight actually matched! This time, I'd prefer something a little less dramatic. Just enough to get me out of the fat old bald guy category.
Next week may or may not bring the next round of chemo. At a minimum, we just want to get things straightened out enough to get on with it. Monday will tell when I go in for my 3:30 appointment at which blood will be drawn to determine if the white blood cell count has rebounded enough to go ahead. Then we'll have to decide rather to do both chemo and the root canal or just the root canal. We'll see.
That's it for now, a nice thunderstorm passing by tonight that will make the damn grass grow, which in turn means it's time to break out the mower. Thanks for checking in and for all your fabulous support.
Love,
Mark
Monday, April 21, 2003 10:28 PM CDT
What a Monday this turned out to be. The day began with a call to the endodontist to try and schedule a root canal. As "luck" would have it, they had a cancellation and asked if I could be there at 9:45 a.m. It being 8:45 at the time of the call, not much left to do but get in the car and head south to Leawood, KS where the procedure would be performed.
While in the car I talked to Dr. Belt's office to see if it was O.K. to go ahead before having my blood work checked, which was scheduled for 3:30 p.m. The phone nurse checked with the doctor and called me with the green light to go forward and then come in for my blood work to see if chemo would start that afternoon as scheduled. So, it was beginning to look like all would fall in place for the root canal and chemo. Oh goody!
The root canal proceeded without much trouble, save the difficulty they had in getting me numb (where's the Ativan when you need it). After he got started, this dentist was all business, no small talk, just drilling and filing, drilling and filing. He looked to be in his 60s and had probably done one or two before today. He also seemed to communicate telepathically with the nurse as not more than four words were spoken between the two and none of them were "ooops" or "darnit." Then again, since I had watched an X-Files rerun on Sunday night, the telepathic thing may have just been in my head.
Finally made it to the office around 11:30 and worked until it was time to go to chemo. Got checked in around 3:30, but not back to the treatment room till 3:45. They drew blood from my port and told me to wait until my blood counts could be checked to see if I would be allowed to go forward. All turned out to be fine, and chemo began in earnest around 4:30. Besides my ride (J.R. Dover, my nephew), we had the treatment room to ourselves, which was a first. This probably made things go much faster as well, and I was back downtown by 5:15. Putzed around the office until I felt like it was O.K. to drive and headed home around 7:15.
Like I said, what a Monday. If I only could have scheduled a prostate exam over the lunch hour, I'm sure I would have qualified for some sort of strange trifecta of medical treatment that would get me in the Guinness Book. Alas, I would have to be content with just a root canal and chemo.
And since we started, will finish the week out with treatments Tuesday through Friday. For those of you that have volunteered to drive me down for treatment, beware, I have yet to schedule any rides for the remainder of the week.
As for follow up on the tooth, an appointment to have a crown put on has been made for May 12. That is also the week of my next CT scan, which is set for May 14. After the scan, back to get the results from Dr. Belt on the 21st then most likely another trip to Houston for additional consultation and discussion of what to do next.
In late breaking news, the Big D is acting as if it would like to make splashy return. We think it is unrelated to the chemo, but don't want anything to get me started down that slippery slope.
That's it for now, but will be updating a bit more frequently given that it is chemo week. Thanks for checking in for all of you continued love, support, and prayers. And let's not forget our troops still in harm's way and waiting to return home to their wonderful families and friends.
Love,
Mark
Wednesday, April 23, 2003 11:34 PM CDT
Life just seems to be so much easier when you can limit your medical procedures to one per day. That has been the case for Tuesday and Wednesday and all seems to be going well. Something to watch, however, is that I was treated today by nurse Mary Beth. As you may recall, she was the nurse that took care of me back in January the day I started my fight with the Big "D." As a result, she has taken much good natured ribbing from me and the other nurses. Having now spent nearly four weeks there, a certain familiarity and comfort sets in making the treatment room seem like it's not such a bad place after all.
Familiar or not, have had some pretty high blood pressure readings whenever I go for treatment. I blame it on the automated blood pressure machine that squeezes my arm so hard I'm squirming in the chair. It seems they just have to do something to make you uncomfortable.
I have begun to fight back, however. One of the medicines I take 5FU (that's really what they call it, FU) is known to produce mouth sores. As such, the nurses have patients getting the old FU chew ice and/or drink ice water before, during, and after getting FUd as a way to prevent this phenomenon. Deciding there must be better ways to freeze the old kisser, Tuesday I turned to Baskin Robbins chocolate chip ice cream and today a Wendy's Frosty compliments of J.R. Not sure it will work, but nurses were not at all opposed and mentioned that other patients had used popsicles.
J.R. picked me up again for my return trip downtown and this time brought along his cousin Cori. Allowed those two a chance to see each other and gave Cori a demystifying look at chemo. After it was all over, we all went down to the office for a while to visit before going our separate ways (mine was to the couch for another nap). Did not top the hour long nap of Tuesday, but really gets me ready to drive home after spending some quality time with my dear friend Ativan.
Once again, up too late so time to sign off. Hope all is well with you and thanks for checking in. Keep those prayers, good wishes, and good karma coming cuz it won't be long before we have to take another peek at Leroy and Company to see how much damage we've down to the old southsider. I think I saw him at a recent Royals v. White Sox game and he wasn't looking so good.
Love,
Mark
Wednesday, April 30, 2003 3:12 AM CDT
Oh how time flies when your chemo goes well. Wednesday morning here (technically) and just realizing it has been a week since updating the journal. Shame on me, but the end of last week was wonderfully busy and routine, all at the same time. Busy with work and then blessedly routine for Thursday and Friday's treatments.
The best part of the routine, of course, was the eating of the ice cream that I made a standard part of the treatment. No doubt a big reason for the success in avoiding any horribly unpleasant side-effects. It is also probably one of the reasons I've been "keeping my weight up" as the nurses put it, or as I interpret it, "hello Mr. Dover, I see you're still fat!" Seriously, I am now three pounds heavier than my pre-chemo weight, which is fine by me.
I do have to admit having cancer can be somewhat liberating. Eating is a joy once freed from the silly concerns of a few extra pounds. In front of me now are the remnants of a hot dog and the last few sips of some chocolate milk. Turbulence on an airplane is also much less disconcerting, I mean come on, what are the chances of pancreatic cancer and a plane crash! Pretty darn small I'd venture to say.
Now, back to the weekend. Not knowing for sure how things would go, stayed close to home and took my pills like a good boy. A beautiful weekend that allowed everyone to get outside and even mow the grass in a tag-team effort with Michelle. And Max followed around behind with his own mower for good measure. On Sunday, Dave, Mary Beth (not the nurse), and J.R. showed up for dinner, so we grilled out and said goodbye to J.R. temporarily as he returns to Hawaii for a visit before coming back to KC for what promises to be the Dover social event of the year, Dana's wedding!
Monday, back to work and a quick trip to Washington D.C. Monday night. Returned home Tuesday around 8:30 p.m., in time to read Max some books and explain to him over and over why it was too late to start a movie. A busy week ahead, which is great as far as I'm concerned.
Well, time to try and get the days and nights straightened out and go to bed. About the only "effect" I can really complain about is that old tired, Gumpish feeling that hangs around the first week or so after treatment. That said, I don't think most people notice, they just assume I'm a bit slow and kindly offer to help.
Thanks for checking in and thanks again to last week's all-star driving club, Pam, Madeleine, Bruce, David, and J.R. who was 5 for 5 on getting me back downtown. I think he just liked seeing me all messed up on Ativan, which can be quite entertaining if I must say so myself. Take care and keep those prayers, good thoughts, and good karma coming in prep for the scan May 14. And finally, here's to the continued spread of peace!
Love,
Mark
Sunday, May 4, 2003 10:45 PM CDT
A very stormy Sunday afternoon in the KC area. Unlike most dire predictions of tornados in the area, this time the weather people got it right. Tornados began popping up around the Kansas Speedway (2-3 miles southwest of our house) around 4:00 p.m. We spent the next hour or so in and out of the basement as they traveled East and then turned North near downtown Parkville (3 miles east). Lots of damage and such all around us, but we were spared. Michelle's theory, with which I wholeheartedly agree, is that we were due a break about now anyway. And once again I have to ask, what are the chances, pancreatic cancer and hit by a tornado? Pretty slim I'd venture to say.
Finished the work week with relative ease, except for some heavy duty tiredness. Got through that and by Friday was feeling pretty darn good. Part of the blame for the tiredness was, in my opinion, traveling, which as most of you know can be a real hassle, especially when you push it. I added up the time away for my trip to DC and realized that it was just 27 hours from the time I walked out of the house to the time I returned. My timing was also a little optimistic in that I finished treatment the Friday before the Monday trip. Oh well, live and learn, there's still time.
On Friday, I had the honor of meeting with Edward's therapists at his teacher conference. It was a wonderful and sometimes overwhelming experience. Eight dedicated professionals who for two hours talked to us about making Ed's life better. They all have their specialties, some are students, while still others are involved due to Ed's involvement in a communication study. Regardless, to a person their main concern was unlocking Ed's body and mind to the greatest extent possible. Their sincerity and love of Ed moistened my eyes more than once during our meeting. There is a special place in heaven for people that devoted to caring for those least able to care for themselves. It was during this meeting that it occurred to me the best way to describe Ed is "love incarnate."
Saturday I was still on the upswing as for energy, which made mowing the lawn seem like a good idea. Got that done and the rest of the day was for lounging, errands, and putzing. Sunday more putzing and, of course, the tornados. We also decided to go for some comfort food by making my mother's party pizzas. Actually, the recipe was borrowed a long time ago and they have been a family favorite ever since. Perhaps it is the approach of Mother's Day that brought them to mind or maybe the version we devoured Friday night at a party. Either way they were wonderful and kept me busy during the height of the tornados running back and forth between the basement and the stove.
Expecting a "normal" week that includes a trip to New Hampshire. Will be a bit more judicious in making travel plans this time. The week will also include a check of my blood counts and continued antibiotic treatment related to my recent root canal. My CT scan to check on Leroy and Co., is still set for the 14th. So, please continue your prayers, good thoughts, or the rubbing of a Buddha if you prefer, and we'll see how much good we've done so far. Take care and thanks for checking in.
Love,
Mark
Friday, May 9, 2003 11:17 PM CDT
Another week out from the last treatment, which happily meant more energy and normalcy. Another trip, this time to the Granite State, New Hampshire. A rather hard driving lot (we're talking LA freeway type stuff) from what I could tell, living up to their state motto: Live Free or Die. It might as well have read: Drive 55 and Die.
One rather exciting bit of good news is that I won a drawing at work. The prize, a trip for two to London that includes Wimbledon tickets! I may even take Michelle, if she'll go.
Seriously, don't know all the details, but we will be there before June 30, which is the day we have Wimbledon tickets. Will be back shortly thereafter for Max's birthday, July 6. So, everything this summer now gets planned around the trip. Never been to London, but for some reason friends living there seem to think I'm better suited for Australia. We'll see.
Not much planned for the weekend. Sunday will bring welcome relief from Max asking "is it Mother's Day yet?" He is very excited about giving mommy a present, though he has been testing her patience of late. Hopefully, he can behave on Sunday and give mom a well deserved break.
Monday, more blood work and the continuation of the root canal saga (crown fitting). Scans are still set for the 14th at 7:00 a.m. Hoping to see Leroy and Co. in total disarray and/or full retreat. Scheduled to go over results with Dr. Belt on the 21st (I'm out of town on the 19th and 20th). They will compare to the scans from November, which is long enough that we should be able to tell what's been going on in there and how Leroy dealt with the medical profession's weapons of mass destruction. Also need to schedule another visit to M.D. Anderson in Houston for further consultation based on the latest information.
Thank you for checking in and please keep your fingers crossed and continue your much appreciated prayers and good thoughts. Happy Mother's Day to all you mothers out there!
Love,
Mark
Tuesday, May 13, 2003 10:06 PM CDT
Monday's routine blood work turned up something other than routine results. The chemo has knocked my white infection fighting blood cells for a loop. Not a particularly difficult side-effect to deal with on its own, but back into full avoid crowds and sick people mode. And as a precaution, I'm back on an antibiotic.
The blood work did not, however, prevent me from forging ahead on Monday with the fitting for a crown on the tooth that had the root canal. It was questionable for a while, but Dr. Belt gave the go ahead provided I started the antibiotic that day. All went well and this little annoyance will be behind us relatively soon.
My next trip to Houston and the M.D. Anderson Cancer Center is scheduled for June 4. My appointment is for June 5 and I will again be staying with my friend and partner, Steve Selsberg. Hoping to work in an Astros game during this visit, but doubt that it can top our entertaining evening with the Houston Rockets and Yao Ming's parents. Will try and squeeze in my appointment with Dr. Ajani to go over the latest CT results and discuss next steps.
Speaking of CTs, since my next one is scheduled for 7:00 a.m. tomorrow morning, time for bed. Will not meet with the doctors here until May 21, which allows time for a radiologist to compare the results to the prior two scans, draft a report, and then forward to Dr. Belt for the May 21 meeting. Also allows me time to go to Scottsdale on a quick business trip the 18th through 20th.
On a related note, I was successful in convincing Dr. Belt that the CT should cover more than just the abdomen and pelvic area. It will include the chest so that we can be sure there hasn't been any further metastasis. It's unlikely there has been further spread during chemo, but am trying to stack the deck to ensure some good news.
Anyway, as I said, time for bed. Thanks for checking in and for leaving your notes in the guestbook, which are absolutely delightful.
Love,
Mark
Saturday, May 17, 2003 11:37 AM CDT
Wednesday's scans went off without a hitch. Made it to work by 9:00 and the rest of the week was pretty routine as far as work goes. Today, the neighborhood garage sale is under way and, yes, we are a participating merchant.
My efforts to avoid sick people were somewhat in vain given that Max was diagnosed with scarlet fever on Thursday. He's been out of school for a couple of days and probably won't go back until Tuesday. He's feeling much better now that he's been on an antibiotic for a couple of days, but is having a hard time understanding why he can't play with his friends who are all out running around the neighborhood. My antibiotic should cover this exposure and as luck would have it Michelle is also on one for a nasty sinus infection she's been fighting. Edward shows no signs of coming down with it, but we'll just have to wait and see.
London plans are shaping up nicely. Will leave on the 27th of June and be back in KC the morning of July 3rd. Uncle Dave and Aunt Mary Beth are going to stay with the boys for practically the entire time we're gone with some help at the end from Laura and grandma the last day or so (still trying to figure out a few details). With Dave and Mary Beth on the job, however, Michelle will get a real break and relax for a while. Let's hope.
Speaking of trips, I'm off tomorrow for Scottsdale AZ and the Phoenician resort. A business trip to attend the annual meeting of the Beer Institute, returning Tuesday. I'm not kidding, there really is a Beer Institute and it's not just the only college that Homer Simpson applied to. In reality, it is a fine institution that represents America's leading brewers on important issues of the day. Is this a great country or what?
And speaking of reality, will meet with Dr. Belt on May 21 to go over the results of Wednesday's scans. Hoping to see Leroy and Co. in full retreat. So, thanks for checking in and for your continued support, love, and prayers.
Love,
Mark
Wednesday, May 21, 2003 9:36 PM CDT
Our meeting with Dr. Belt this morning to discuss the results of last week's CT scans failed to produce any earth shattering results. It appears that we've battled Leroy to another draw. No further metastasis or even growth of the tumors, which again means all is stable. Disappointing yes, but still blessed not to have any spreading or even symptoms related to the cancer.
As for what's next, we discussed again treating the cancer with octreotide (a/k/a sandostatin), which is s synthetic hormone that binds to my specific type of tumor (neuroendocrine or islet cell) and is supposed to tell it not to grow. The octreotide is administered once a month with a shot in the bum. We are also again discussing the possibility of embolizing my liver, which is where one of the two arteries supplying blood to my liver is intentionally blocked of with some sort of goo that cuts off the blood supply to the tumors. Since we all need a functioning liver, the procedure treats only half the liver, but is repeated so that both sides receive the same treatment. The procedure involves inserting a catheter through the groin much like angioplasty and involves a two or three night stay in the hospital. We also discussed a partial resection of the pancreas to remove the cancer from that part of my body.
A final decision on what to do next will await my visit to M.D. Anderson in Houston on June 4-5. Will get their view on what to do next, again consult with Dr. Belt, and then make a decision. Bottom line, we have to keep treating it to have any hope of beating it.
This has not been a particularly easy entry to write. I would have much preferred reporting on the significant strides we'd made, but you play the cards you're dealt. I want to again thank all of you for your support, which has carried me this far. I feel so lucky to have had such wonderful people expressing their concern and offering their best wishes and prayers. At the risk of imposing further, I simply ask that you continue to keep me, Michelle, Cori, Max, and Edward in your thoughts and prayers.
I hope that covers it since it has been a long day and I can't think of any more to say. Sorry to be so bland this time, but that pretty much sums up how I feel right now. As always, thanks for checking in and will update again over the weekend with the latest on what's going on including a Wimbledon update!
Love,
Mark
Monday, May 26, 2003 9:41 PM CDT
Moving past the momentary let-down of Wednesday to focus on what's next. June 5, is the visit to M.D. Anderson and then, hopefully, back to KC for treatment assuming we have a medical consensus on next steps. Other than that not much more to do. My blood counts are all back up and except for this dogged tiredness all systems are go, and I mean go!
A relatively low-key weekend featuring a visit to Aunt Caroline's in Garnett, KS. And as usual, even though our plan was to take her out for lunch, when we arrived lunch was in the final stages of preparation. There were fried pork chops, green beans, french fries for Max, and best of all gravy that magically appeared in the skillet. A wonderful meal with a wonderful woman. Max also got to pick strawberries in the garden, a real treat for a suburban kid.
As is the rest of the family, we are all looking forward to Dana's wedding June 7. Expecting a great turnout for Dana, who is most probably one of the sweetest people you will ever meet. We couldn't be happier about having the chance to share Dana's big day with her and Jeremy.
Promises to be a great weekend and will mark Max's debut as a ring bearer. We've already provided adequate disclaimers that he's only 3 (turning 4 July 6), but expect he'll do a great job. Out of an abundance of caution, however, Michelle is having her hair done the day of the wedding just in case she has to make an appearance in the wedding video to help usher Max along his way.
As always, thanks for checking in and for continuing to send your kind thoughts and prayers. All are welcome and needed to help me get back on track toward beating this thing. I like to use all those good thoughts and prayers as pressure on myself not to let you all down and to keep moving forward. Hope you had a great Memorial Day, including a chance to reflect on its true meaning.
Love,
Mark
Wednesday, May 28, 2003 10:25 PM CDT
My expectation of a relatively quiet week was wiped out by the need for a trip to the ER. Late Tuesday afternoon I started having a sharp pain in my left shoulder. It quickly progressed from bothersome to hurts like he**. Noting that it was 4:20 in the afternoon, I quickly called my oncologist's office to make sure I talked to someone before they closed and turned things over to the answering service.
After describing my situation to the nurse, she consulted with Dr. Belt who advised me to go the ER. In the meantime, I had been sitting in my office by myself with the door closed. Thinking I was having a heart attack, I asked Kari to hobble down to my office to avoid the embarrassment of having the cleaning crew find me slumped over my desk! After getting the doctor's orders, Kari sprang into action and volunteered to take me to the hospital.
After talking to the nurse, I was fairly confident that I was not having a heart attack. The drive to the hospital, however, was a harrowing experience that the faint of heart may not have survived. After running several red lights on Main street and being told to quit being a backseat driver, I decided the best course was to try and remain calm and hope that someone somewhere was at that time praying for me as hard as I was praying!
We arrived safely at St. Luke's, got checked in and proceeded to wait for about an hour before going back to the patient area. Kari handed me off to brother Dave who was unbeknownst to either of us about spend the next five hours hanging around the ER with little brother, Mark. Some guys like Dave just have all the luck. Back on the homefront, Michelle was attempting to keep track of things over the phone, remain calm, and get kids ready for bed. None of these being easy tasks.
I was first seen by a med student (or did he say undergrad student?) who failed to convince me that he was up to the task of figuring out what to do next. He then reported in to the attending physician within my earshot. Given my recent medical history, the doctor thought we may want to do more than prescribe Tylenol and send me on my way. I then met the good doctor Lorei, who did impress me as someone that knew shi* from shinola (blame that reference on a recent discussion of the movie "The Jerk" with Steve Martin).
First my shoulder was x-rayed to look for possible structural problems and, more importantly, any possible bone metastasis. After some lonely moments of waiting, they gave me the good word that there did not appear to be any type of lesion on the bone. Next came another CT scan. This, of course, meant an hour of drinking the gatorade type liquid used to help visualize your inerds during the scan. Apparently, the scan was ordered to look at certain areas around the diaphragm that can cause pain in the shoulder if infiltrated by a tumor. This too turned out to be negative.
So, in the end I left without a definitive diagnosis of what is causing the pain that is still hanging around. I did leave with a prescription for pain reliever Lortab that works well on the pain, but causes a little drowsiness and dizziness. Not nearly as much fun as the Ativan.
Was able to go to work today, but sadly had to cancel my plans to go to the Royals afternoon game. Instead, one of my fellow travelers to the game, Roger Geary, drove me to the pharmacy to get my prescription filled. They were a sorry substitute for Miller Lites and hot dogs at the ball game. Oh well, thanks Roger. And it was probably a good idea to have passed on the ball game as I would have been the fan shown on ESPN asleep at the game, mouth open, and drooling.
If the pain does not resolve itself in the next day or so, I was directed by the ER doctor to see an orthopod. I will also, of course, follow-up with Dr. Belt and may need to have another bone scan to definitively rule out metastasis to that area, which I think is unlikely. Oh well, just when you think it's safe to go back in the water, something else tries to bite you.
One other bit of important news is that Max is now a pet owner. We have two fine looking Hermit Crabs. For those of you unfamiliar with these creatures, just visualize a big bug with a sea shell stuck to its back that it drags around and then hides in as needed. Actually quite fun and a good starter pet. Max can take them out of their cage (aquarium with rocks in the bottom) and let them walk around. As for their names, it's Bruce and Bruce. And since Max has decided one is the daddy and one the son, I suppose we could call them Bruce Sr., and Bruce Jr.
That's it for now and I'll keep you posted on the shoulder issue that will hopefully just go away as suddenly as it appeared. Thanks for checking in and a special thanks to Kari the ambulance driver and her assistant Bruce Tepekian who made sure we got in the car for the ride of a lifetime! And, of course, thanks to Dave for hanging in there and driving me home after leaving the hospital and finally finding something to eat (Westport Flea Market) at 10:30 p.m.
Love,
Mark
Sunday, June 1, 2003 10:44 PM CDT
Tippins French Silk pie and a cold Miller Lite, boys and girls (over the legal drinking age), it just doesn't get any better than this. Sunday night and putting the finishing touches on a fantastically normal weekend. The shoulder that sent me to the ER on Tuesday hasn't been a problem since Thursday. Looks as if it may have simply been a delayed reaction to the manual labor I performed on Memorial Day, mowing the law.
Pretty sad when mowing the grass whips your a**, but not surprising given that the closest thing to exercise of late is having to go ALL the way to the beer fridge in the back of the garage for some liquid refreshment. Not willing to give in, however, and admit that mowing is most enjoyed as a spectator sport, tempting as it may be to do so. My strategy is to plan the effort more carefully, which means do the hill first and build in plenty of break time. I may need a union to help me with my negotiations for more break time, but believe it's worth the fight.
Alternatively, there is the don't water the grass strategy, which drastically reduces the number of times the lawn needs mowing. While totally appalling to some yard fanatics, I've always believed in letting nature take its course when it comes to matters of the lawn. This strategy has the added benefit of allowing me to look upon those with sprinkler systems, which invariably waste thousands of gallons of water in the name of the holy grail of suburban lawn care in KC (green grass in August), with total disdain and even chastise them for their environmentally unfriendly ways. So, my alternatives leave me to choose between pride and fun. Stay tuned.
Now back to the weekend. Friday night was anything but ordinary for Michelle. It was then that she participated in the American Cancer Society Relay for Life. This is that annual event during which people walk through the night to raise money for the ACS and show their support for survivors and remember cancer victims. Michelle was on the team called the Shortpods that was organized by my friend and colleague Lisa Lukaszewski. Also on the team were many of Lisa's friends, Kari "the gimp" Grace who participated on crutches, John and Terri Kelly, David and Jesse Baker, and probably others whose names escape me at this hour, but I don't dare wake Michelle to ask.
I stayed home with the boys while the Shortpods walked through the night. There was a survivors lap to kick things off, but I don't want to get cocky given the newness of my battle. Hell, even "W" hasn't declared victory over Iraq yet. And thanks to the generosity of many of you, Michelle finished in second-place among individual participants for the amount of money raised. Thank you donors and thanks to the Shortpods.
I made it through the night and even had time to entertain the neighbors (our friends the Youngs) on the patio during part of the evening. Michelle rolled in around 5:30 a.m., and thankfully the boys slept in till about 9:00 a.m.! The rest of the weekend was spent recovering although we did manage a trip to Dave and Mary Beth's so the girls could go shopping on the Plaza.
Expecting rain the first part of the week, which will make the damn grass grow. Wednesday it's off to Houston to meet with the doctors at M.D. Anderson and then back to KC Friday morning just in time for the big Dover social event of the summer, Dana's wedding to Jeremy. A Plaza wedding followed by a reception in The Little Theater part of Municipal Auditorium. A great time should be had by all if there is a positive relationship between planning and having a great wedding and reception.
Finally, a note to share with you another "revelation" concerning the little things in life. Is there anything sweeter than a tired three-year-old saying "good night, daddy, I love you" just as he is rolling over to go to sleep? I can't think of any, but it may simply be my heightened awareness of all things small and wonderful that I've enjoyed over the last several months. Thanks for checking in and keep your eyes open for all things small and wonderful, which are all around us just waiting to be enjoyed.
Love,
Mark
Tuesday, June 10, 2003 0:54 AM CDT
Well, where to begin. In our last episode, I was preparing to travel to Houston for my latest consultation at M.D. Anderson Cancer Center. Once again I enjoyed the hospitality of my friend and partner, Steve Selsberg. This time we took in some baseball and watched the Astros play at Minute Maid Park. Nice facility, but could use a better name.
My appointment was at 2:30 Thursday afternoon. I made into an exam room around 5:00. I met with an obviously weary Dr. Ajani around 5:45 after visiting with one of his Fellows, Dr. Chang. By the time they prepared a letter for Dr. Belt in KC, it was just past 6:30. So, what did they say, Mark?
Basically, they believe that we should discontinue chemo as it is not having the desired effect of shrinking the tumors in my liver or pancreas. Instead, we will focus on the liver, a more pressing problem, and try arterial hepatic embolization. This is the procedure where we try to kill/shrink the tumors in my liver by cutting off their blood supply. It is accomplished by inserting a small tube into an artery in my leg and feeding through to my liver where the surgeon will assess the situation and decide which half of the liver to begin with. Once the decision is made, some sort of goo is injected blocking the artery so that blood can not pass through.
The procedure is repeated for the other side of the liver six weeks after the first procedure. Each time I can expect a 2 to 3 day stay in the hospital. And while it sounds like a pretty effective solution, there are instances when the tumors maintain a blood supply in spite of our best efforts and avoid any damage.
Have just begun the process of getting this all set to go. Hoping to have the first procedure in early to mid-July as soon as possible after Wimbledon. I was encouraged by Dr. Ajani not to put this off until later in the summer. The first step will be to touch base with Dr. Belt's office (done) to start coordinating with a surgeon. Expect Dr. Belt to be on board with this approach given that it was his first choice back in January.
Noone can say for sure whether the chemo kept the tumors in check over the last 6 months or whether the slow growing nature of my cancer is why there has not been any growth. Similarly, the specialized blood tests are going in different directions and when I asked Dr. Ajani why, I got a very frank "I don't know." That all said, I feel fortunate to still have options and am hopeful that we'll see some serious reduction in the liver tumors as a result of the embolization.
I left Houston Friday morning, arriving in KC about 12 noon. No time to let it all soak in as Dovers were arriving from all directions in anticipation of my niece Dana's wedding Saturday night. And because Max had ring bearer duty, we got to go the rehearsal and rehearsal dinner Friday night. Things went spectacularly all weekend and Max did a great job at the wedding as did his cousin and flower girl Claudia. We hosted a hoard of Dovers on Sunday for burgers and brats and had various and sundry house guests over the course of the weekend. A simply wonderful occasion.
For now, that's where things stand. Will be working on the details and finding out more about the procedure over the next week or so. All systems are still go for London and looking forward to it now more than ever. There truly is no time like the present. I was reminded of this when Dana's mother Robin reminded everyone at the rehearsal dinner that I had been the ring bearer at her wedding to my brother Bob way back in '66. She even brought a picture to prove it that I think will just have to go on the web-site. Thanks for checking in and for your continued support.
Love,
Mark
Wednesday, June 18, 2003 11:17 PM CDT
Just back this afternoon from Washington D.C. A quick business trip that featured a visit to the Library of Congress for some debates on post 9-11 security measures and their impact on civil liberties. The event was co-sponsored by Shook, Hardy and very interesting. And as for the Library, wow, what a beautiful building (inside).
Not much new to report on the health front besides an appointment with Dr. Belt in KC to discuss the specifics of the embolization procedure. Will meet with the good doctor on Friday afternoon and provide an update shortly thereafter. Hoping to schedule the first procedure the week of July 7th, which will be the first full week after returning from London. Still unclear as to the recovery period other than I've been told to expect two to three days in the hospital each time they go in and do their business.
Will squeeze in one more business trip next week before going to London. This time to Philadelphia, leaving the 23rd and returning the 25th. Off to London the 27th and back in KC the morning of July 3rd.
Going to keep this report short since I expect the next one will be a little more detailed as to what to expect from the embolization treatments. Still feeling fine with all systems functioning well. As such, trying to live every day to its fullest, which tonight means a drumstick ice cream treat! After London, however, plan on taking a long hard look at my diet with an eye toward losing the weight I gained as part of my bulking-up-for-chemo strategy that in the end proved unnecessary. A lot of fun, but unnecessary.
As always thanks for checking in and for keeping me in your thoughts and prayers.
Love,
Mark
Friday, June 20, 2003 11:52 PM CDT
As planned, we met with Dr. Belt this afternoon to discuss the chemo-embolization procedure that will be our next step in the battle against Leroy and company. As he always does, Dr. Belt explained things in a clear and concise manner and spent quite a bit of time with us (Ed, Michelle, and I) to do so. No specific date set yet, but sounds like the week of July 7 will not be a problem.
Dr. Belt explained that a catheter is inserted into an artery in my leg and then positioned just outside the liver near the point where the main artery branches off into the liver. At that point, a dye is injected to help visualize the structure of the liver's blood supply, which can vary quite significantly from person to person. I will also be injected with anti-nausea drugs and more chemo that is delivered directly to the liver where it will supposedly stay. Remember, this is "chemo" embolization.
Next, after determining which side is worse as far as tumor growth goes, the artery supplying blood to that side is blocked off. While I've reported in the past that the blockage is accomplished with some sort of "goo," they actually use some of my own blood that has been drawn during the procedure and allowed to clot before being reinserted.
At this point, the tumors are cut-off from their blood supply and hit with some more chemo. At the same time, however, half of my liver is also cut-off from its primary blood supply. A lack of blood supply apparently does not set well with one's liver. And as luck would have it, the liver has its own pain sensing nerves making for an unpleasant few days. In fact, pain management is the reason for the stay in the hospital after the procedure. The length of stay depends primarily on how soon the pain can be managed without the need for me to be hooked up to a self-controlled pain medicine I-V pump.
During the procedure, I will be able to watch the TV movie version since a local anesthetic is all that is required. I may, however, request that my old friend Ativan go with me into the room where the procedure is performed. By the way, the procedure will be done at St. Luke's by Dr. Gordon who, according to Dr. Belt, has performed nearly 250 other chemo-embolizations. I've already met Dr. Gordon who is the surgeon that implanted the "port" in my chest.
The other half of the liver won't be neglected either. Four to five weeks after the first go-round, the procedure is repeated to treat the tumors in the other side of my liver. Same drill after which we begin the waiting game to see how effective the treatment has been at reducing and/or destroying the gaggle of tumors hanging around in my liver.
One drawback to this procedure is that it only treats the liver and not the pancreas. The liver, however, has to be the focus for now since it is absolutely essential to surviving. In other words, the pancreas will just have to wait its turn while we take care of the more pressing problem of keeping the tumors in the liver from disrupting its function and in a worst case scenario, causing liver failure that is inconsistent with continued life. For now, I won't even go into the possible options down the road and concentrate on what we know has to be done next. And besides, if we can't control what's going on in the liver, there's no use in bothering with the pancreas and some sort of major surgery to remove part or all of it for that matter.
Dr. Belt's office will start getting everything in order with insurance and the scheduling of an exact day to have treatment number one performed. I'm pretty sure it will be the week of July 7th, which would put the second procedure some time in early to mid-August. In the meantime, time to start getting ready for London. We leave on the 27th of June and back in KC the morning of the 3rd.
In other news, Max, Ed, and Michelle have all come down with strep throat. So far, I've avoided it and may escape given that all three have been on antibiotics for at least a couple of days and I show no signs if it, knock on wood. The boys are both back in school and Ed even went on a "field trip" to ride a miniature train, which according to Max and Michelle he loved. I'm off to Philly Monday through Wednesday, arriving back in town with just over a day before leaving for London.
That's about all folks. One thing I've learned for certain is that we've got a ways to go with this thing. I couldn't have come this far without your support, good wishes, and prayers that I hope will still be forthcoming over the course of what promises to be a couple of rather trying months. And once again, thanks for checking in and your continued support. I'll post one more journal entry before leaving on the 27th that will, hopefully, allow me to provide the details relevant to scheduling the first procedure.
Love,
Mark
Thursday, June 26, 2003 4:57 PM CDT
Just a quick update before departing for London tomorrow morning. The date for my chemo-embolization has been set for July 8. Check-in at St. Luke's at 7:00 a.m. followed by the procedure at 10:00. Afterwards, back to the room for a couple of days of recovery during which it is unlikely that I'll be much company. Between Michelle and a few others, I'll have plenty of people to complain to, so spare yourself the awful sight of me in a hospital gown.
With that all set, time to concentrate on relaxing during the trip. We arrive at 10:30 p.m. London time and will be staying at The Goring. Back to Parkville the morning of July 3rd just in time to celebrate the 4th and Max's birthday July 6th (party of screaming four-year-olds Saturday afternoon the 5th). And with Dave and Mary Beth, grandma, and a few other brave souls chipping in, even Michelle should be able to relax for a few days.
We couldn't get away, however, without first having a little excitement. On Sunday afternoon, Max became something of a hero when he came in to tell Michelle who was working on the computer that Ed had a little "accident." The accident it turns out was Ed pulling his feeding tube out of his stomach. And while they do need to be replaced from time to time, they are not supposed to be removed by the patient!
As instructed, Michelle called 911 as well as myself who was putzing around downtown at the office. We'd been told this might happen and that emergency personnel would be able to reinsert the tube before the hole in Ed's tummy began to close up, which would not be good. First the firemen arrived followed by an ambulance. As it turns out, none were willing to give reinsertion a try. As a result, Michelle piled him in the minivan and rushed him to Children's Mercy. The firemen did call ahead and tell the hospital Ed was on his way, which paved the way for him to be able to get right in upon arrival. Within an hour they were on their way back home.
A special thanks to our neighbors, Heather and Michael Youngs for taking care of Max during the excitement. I turned out to be pretty useless although I did get to wave to Michelle, the firemen, and the ambulance driver as I passed them along the road on my way home. Better this happened now rather than while we were gone. The new button should be just fine and the old one needed replacing anyway.
Will fill in the details of the trip upon our return. In the meantime, thanks for checking and bon voyage!
Love,
Mark
Sunday, July 6, 2003 8:01 PM CDT
Hello mates, back from London safe and sound after a wonderful visit. In the interests of time and more importantly your patience, just a few highlights. First had to be the three hour cruise on the Thames Saturday night after our arrival. An excellent way to see some of the sights. And as you may recall, this cruise was a charter by our friends John and Nancy Fraser in celebration of the completion of Nancy's most recent book. The black tie affair was a wonderful chance to catch up with the Frasers, Sebrees, and other friends.
Since the British know a thing or two about sailing, this three hour tour did not leave us marooned, although one of the guests looked a lot like Thurston Howell, III (probably just the tuxedos). Our departure was delayed, however, by our having lost Michelle who found her way to the bar on another boat packed with 18-year-olds on their way to cruise the river in celebration of some of their birthdays! After locating her and pulling her off the ship after her "mistake," it was smooth sailing.
Sunday brought about an afternoon and evening with the Sebrees, Sam, Lisa, Nate, Anna, and lil' Sam (perhaps the cutest baby ever, including my own!). This visit took place at the Sebrees' home in Surbiton. As such, it involved riding the train from London, which was quite easy even for an American (thankfully most of the British speak something close to English). Monday, of course, was Wimbledon. We saw Serena Williams, Tim Henman, and Andy Roddick all win their matches on Centre Court. What a great venue, full of tradition and a whole lot of fun. If you ever go yourself, pass on the strawberries and cream (we call it milk in this county), you won't be missing anything.
The next couple of days before heading back to the States featured a grandma tour on a double decker bus and visits to several pubs including the Red Lion, Bag O Nails, and other colorfully named establishments. One thing is for sure if and when we go back, it won't be for the food. By far the best meal was Indian food at a place called Veraswaamee. So the moral of the story is if traveling to London, eat ethnic.
Back in Parkville on the morning of the 3rd. Grandma and papa Dan were in charge and had things under control. They had taken over for Dave and Mary Beth who did an equally stellar job of taking care of the boys who were both sorely missed. Not long after arriving home, however, reality had to be reckoned with. Within an hour of unpacking we found a letter from our insurance company saying that it was not going to pay for the procedure I was scheduled to undergo on the 8th. Add to that a message from the doctor scheduled to perform the procedure that he wanted a consultation ASAP and the stress came creeping back in.
The insurance issue has thankfully been worked out and all is a go for Tuesday morning. My visit with Dr. Gordon was also productive in that it gave me further insight into the procedure and what to expect. One thing to expect is a three to four day stay in the hospital given the extent of disease in my right lobe, which is the lucky winner in the contest of who goes first. I also learned that there are three procedures rather than just two, all four weeks or so apart from each other. That, of course, begins to conflict with the Chiefs season (real football), which is really going to make me hate Leroy!
During my visit with Dr. Gordon at St. Lukes on the afternoon of the 3rd, he also had me undergo a sonogram to help him visualize the complicated anatomy of the liver, which can vary widely from person to person. He also used a phrase in describing this procedure, which at the time I really didn't like much. He talked of "buying time." That, to me, sounded like he didn't expect things to go all that well long-term. That, however, is unacceptable. Hearing those words was a little depressing, but seeing Max on his birthday, being around Cori, and holding Ed was quite rejuvenating. And then I read some of the recent guest book entries, which added fuel to the fire. Thanks!
As for the 4th of July weekend, it was a whirlwind. Besides Michelle's mom and Dan, we had her sister, Maria along with her husband Brian and their two boys Will (age 4) and Henry (age 2). Add Max to that crowd and you have constant motion. Best of all, however, we were fortunate enough to host Great Grandma Walter on her first visit to KC. A wonderful representative of the Greatest Generation that adds a calm to wherever she is present. Add in a birthday party, a visit from our former neighbor Jackie and her British guests, Dave and Mary Beth stopping by and you can see why I say whirlwind. And in the meantime there is my neighbor Michael and his dad Russell digging us a horseshoe pit in the side yard for good measure.
I hope this message is not as complicated as the conglomeration of events it attempts to describe. Believe it or not, there is more, but that will just have to be worked in over the next couple of entries. And besides, Great Grandma is ready to go to bed and our computer is in the guestroom. Not sure how I will get the next update posted, but promise that there will be news on here from the hospital.
As always, thanks for checking in and if you have been holding back a special prayer, chant, or whatever, now would be a good time to break it out. Please also remember that hospital gowns have no backs so spare yourself a trip to the hospital and the risk of being mooned. Besides, as I mentioned last time, not likely that I'll be much company and will be just fine with a TV remote in one hand and pain med pump in the other.
Love,
Mark
Thursday, July 10, 2003 0:39 AM CDT
An important lesson learned so far in this adventure is to stay flexible. The first chemo-embolization took place Tuesday afternoon. After arriving at the hospital at 7:00 a.m., it was hurry-up-and-wait until around 2:00 p.m. I was prepped with various drugs (antibiotics, anti-nausea drugs, anti-inflammatories, etc) and one very unpleasant procedure (more on that later).
The procedure was performed in an operating room setting with equipment that allowed the doctor to see inside of me during the procedure. I was sedated with "happy juice" as the doctor put it, but awake so that I could help out by holding my breath at various times so the doctor could get a good look at what was going on inside my liver. And most of the time he even remembered to tell me it was O.K. to start breathing again.
The procedure took about two hours. During the process of looking around in there, the doctor made the decision to back off his original plan of attack and take a more cautious approach. The problem it seems is that dirty bast**^ Leroy is leaning pretty hard on a particular vein that if not allowed to function could cause some serious problems. So, the limited attack focused on Leroy and five or six of his closest buddies. The hope is to shrink Leroy and make it possible to perform the more aggressive procedure next time.
The change in strategy has had some good and some bad repercussions. A good one was that the post-procedure pain was much less than what was expected when the original plan was laid out. I started out afterwards with a morphine drip and access to "the button." The continuous drip was turned off around 8:00 p.m. and I only pushed the button once after that, which was around 11:30 that same night. Another good thing was that since the hospital stay was for pain management, and the pain was not there except some soreness in the area he entered the artery, I got to go home Wednesday afternoon and should be back at work Thursday (assuming I get this written and get to sleep).
Another repercussion is that if the doctors get their way, I'll have this procedure three more times for a total of four. I say "the doctors" since the insurance company in its infinite wisdom only authorized ONE treatment to start with, setting up a treatment-by-treatment battle with the man behind the curtain to whom we are to pay no attention. I hate to keep harping on this, but we seem to be insured by a company (Coventry) generally regarded in the KC medical community as "the worst." Can't say I have any basis to disagree based on our experience first with Ed and now me.
This next paragraph is not for the squeamish, and probably not for most men. With the prospect of three more procedures in my immediate future, I return to the subject I alluded to earlier, pre-procedure prep. Let me just say two words, Foley catheter. A little device apparently named after someone named Foley that keeps one's bladder empty during certain procedures by connecting the bladder to a urine collection bag via a rubber hose. And, of course, there is only one way for that hose to get to one's bladder. All I can say is yikes, and why would anyone want to have their name attached to such an invention. I can see the Jarvik heart thing, but if someone named Foley had gotten anywhere near me around 11:00 a.m. on Tuesday morning I may have resorted to violence, which would have been quite pitiful considering how I was tethered to the bed at about that time.
So, where do we go from here. First is a follow-up visit next week on the 15th with Dr. Belt to check blood and schedule the next procedure. And assuming we receive dispensation from the insurance company in a timely manner, Dr. Gordon wants to get right back at it the week after that and return to the same lobe he started on Tuesday (the right one, current home to Leroy) and aggressively take on the rest of the gang. Then the next two procedures are for the left lobe (much less diseased) and a clean up mission, probably again on the right side.
But as I said at the beginning, flexibility is key. I think Dr. Gordon made an excellent call Tuesday to try and clear the way for future success while minimizing risk, particularly since I'm not having major liver problems at the current time. Based on what he saw during the procedure, he feared that if he went forward as aggressively as originally planned he might severely damage the liver and put me into liver failure. No need to get greedy when I'm still functioning relatively well. On the other hand, we can't just sit back and not attack this cancer while we can.
For now, all that is definite is my appointment with Dr. Belt next Tuesday afternoon. After that it should be back into the hospital the week of the 21st. By that time Leroy should be hurtin pretty bad (I knew all along he was trouble) and we can then really get after the rest of the mess in the right lobe. As you can tell, this is still a process/fight in its relatively early rounds. More amazing to me than the marvels of modern medicine, however, is the support, love, and caring that I have so greatly benefited from these past several months. For this I can only offer my heartfelt thanks and count it among my most important blessings.
Thanks for checking in and, again, for your continued love, support, and caring.
Back at you,
Mark
Wednesday, July 16, 2003 3:35 AM CDT
The surprise/relief of getting out of the hospital earlier than expected last Wednesday was replaced by the pain of Friday's turn of events. It appears that Leroy is not willing to go quietly. Let me explain.
In our last episode, I was home recovering from some minor soreness in the groin area where Dr. Gordon entered an artery to access my liver. The procedure had been scaled back during the operation based on what he could see at the time and the change of plan, we thought, accounted for the lack of pain in the area of the liver. That all began to change last Thursday afternoon when I started feeling very tired and "puny" towards the end of the day at work.
Friday morning the 11th, the pain began take hold. It felt as if a 2' x 4' had been slammed against my right side, but the pain was on the inside. Having been prepared for pain management prior to the procedure, we were not exactly surprised. The problem, however, was that the medicine I had at home for pain could not control it. Upon calling Dr. Belt's office late Friday morning, I was advised to come see him and that they would work me in around 1:30.
Dr. Belt put me on a stronger medicine (morphine in a pill) for acute pain and ordered an ultrasound. By the time I had the ultrasound, squirming around on the table was a struggle. The ultrasound checked out O.K. and it was determined that the source of the pain was indeed a delayed reaction to the chemoembolization. It was now after 4:00 p.m. and I was supposed to make a decision about whether to try and manage at home hoping the new drugs would kick in or go into the hospital for IV pain meds. By this time, however, I literally could not think straight and sort of lost it right there in exam room number 6.
As a result, Dr. Belt and Michelle simply said "you're going across the street." From there, Michelle had to corral kids and one of Dr. Belt's nurses (mean old Martha) wheeled me to admitting. I was readmitted to St. Luke's and found myself back on "Main 5," the oncology and hematology floor. There I was hooked back up to an IV (no Foley this time, thank God) and given more morphine via a steady drip and "the button," which allowed me to add a little to the mix as needed.
Somewhere along the way Friday night, I apparently got a little too much morphine. This brought on nausea that lasted until Saturday evening and prompted a change in the type of medicine I was receiving. It also prompted the return of my old friend Ativan, which worked its usual magic. It took until Sunday night to get rid of the constant pain leaving me with the occasional tweak as an unpleasant reminder of the weekend. I was discharged on Monday morning and spent the remainder of the day at home resting. On the way home, however, I did get to go with Michelle to pick Ed up at school.
Continuing my good fortune, at work today the fire alarm sounded and we were told this time it was "real." It wasn't. The 23 story climb down was all for nothing even though it did allow me to spend some quality time with my partners Bill Allinder and John Sherk who looked after me on the way down by running ahead and waiting at the bottom (not really, they actually hovered around while at the same time trying to be "cool").
For now, some lingering pain when I move the wrong way and still taking some time-released morphine with other pills available for break-through pain. Beginning to look like the conservative approach taken last Tuesday really was a good idea since it allowed Dr. Gordon to concentrate on Leroy and a few of his heftier buddies. And if this is what the conservative approach brought, I don't really want to even think about what it would have been like if he had been more aggressive. That said, things probably only got out of hand this time since it started outside of the hospital setting and really got a running head start (someone needs tell Leroy cheaters don't win, at least when they're caught!)
The weekend's little set-back caused me to cancel a meeting in Milwaukee that I was really looking forward to. This, of course, only deepens my resolve and hatred of Leroy & Co. Will be around KC the rest of the week trying to relax, but still keep things going at work. And I do listen to your admonitions and promise not to over do it. Honestly, this past weekend was the worst and forced me to confront the fact that I really am sick and have to remain vigilant if I'm to win this fight.
Thanks for checking in and thanks to those brave souls that heard about my hospitalization and risked getting mooned (Downs, Duma, T. Davis, and brother Dave). Up next is a visit with Dr. Belt on Monday the 21st to talk about the next procedure. Hopefully, nothing will change between now and then as far as my health goes.
Love,
Mark
Tuesday, July 22, 2003 11:54 PM CDT
Oh what a difference a week can make. Late Tuesday night here and happy to report the pain from the first embolization and my morphine hangover are both behind me. Best of all, I should be enjoying this current state of affairs for another two weeks, which is when I'll go back to St. Luke's for round two.
Specifically, the next embolization is scheduled for Tuesday, August 5th. This has not been confirmed 100% by the doctor performing the procedure (Dr. Gordon), but we're pretty confident it will work. The date was picked by Dr. Belt who I saw on Monday during my follow-up visit that was uneventful aside from a lively discussion of who could of possibly designed/picked the pattern of my hospital gown, which was unbelievably ugly. Dr. Belt is sure a lawyer had his or her hand in it since according to him they have no taste. Continuing his assault on my fine profession, he noted that my wearing of sandals without socks to work solidified his opinion that lawyers are not members of a profession. It was all good natured ribbing, but I still felt it necessary to remind him I'm a defense attorney!
The timing works quite well on a number of fronts. First of all, it allows a thorough amount of recovery time that I can put to good use on things like going to today's Royals game (a big disappointment). It will also allow for a couple of business trips. On to beer mecca, Milwaukee, on the 29th, followed by a trip to New Hampshire later that same week.
Then, of course, there is Ed's school picnic tomorrow night at Loose Park. An annual event that is even more important to attend now that Michelle is on the school's Board. She knocked them dead with her introductory presentation and the Board, which has as members many of KC's philanthropic and civic leaders, has welcomed her with open arms.
She's still learning the big sports names in town, however, as evidenced by her question to me after the meeting -- "who is Willie Lanier?" She sat next to Mr. Lanier at the meeting and I suppose would not have had to ask if the guy's name had been something like Nitzke. And let me just say this now before football fever really takes hold this year, beware cheeseheads, the Chiefs are coming to Green Bay this year, KC's year.
Well, back up to my old tricks of staying up too late, which I really need to quit doing. Never too late, however, for a late-night snack (ice cream drum stick) and a cold Miller Lite. Thanks for checking in and good night! (Good riddins to Uday and Qusay). Cheers.
Love,
Mark
Friday, July 25, 2003 11:27 PM CDT
As the saying goes, the best laid plans of oncologists and lawyers often go awry. Turns out that the date Dr. Belt and I discussed for the next embolization did not work for Dr. Gordon or the "Special Procedures Department" at St. Luke's. As such, the next embolization has been moved back exactly one week to August 12th. Check-in is 8:00 a.m. and the procedure is scheduled for high noon.
Just like last time, the plan is for me to be in the hospital for three to four days for pain management. Keep your fingers crossed that it won't be another delayed reaction and we just get it all out of the way in one visit. And hopefully, Dr. Gordon will be able to go all out this time and really get after it.
The delay provides the opportunity for another week of feeling well and furthering my belief that we will beat this thing, we have too. I must confess that the lack of an effect by months of chemo was a bit disheartening. The promise of the current plan and time spent reflecting on the importance of "being there" for my family has renewed my faith in a positive result.
Just as important to this renewal is the continuing support of family, friends, and colleagues that I dare not attempt to figure out for fear of jinxing my good fortune. I suppose even this web-site deserves some credit given that without it I may not have thought things through as well and I sure as hell wouldn't have been able to receive the many kind thoughts and words of encouragement delivered via the internet. In any event, bouncing back after the weekend in the hospital combined with some morphine-free reflection has me pretty fired-up.
Another important benefit to moving the date is that I will now not have to miss the 5th Annual Tobacco Division Pool Tournament on August 6th. An event I conjured up at work to further comradery and legitimize at least one night out of the year spent in a pool hall. Usually not much competition in that the biggest obstacle to reclaiming the championship was not participating. Expecting a tough field this year since tornado damage to the usual spot has forced the tournament into Johnson County, eliminating the excuse of many suburbanites that traveling 5 minutes north of the office to the usual spot was just too inconvenient.
Finally, tonight's late-night menu features a good old Snickers candy bar. Made the mistake of going to the grocery store hungry, making a six-pack of Snickers seem like a really good idea at the time. This will no doubt counter some recent weight loss, most likely related to my hospital stay. I have, however, been gaining in the hair department (pictures to follow).
As always thanks for checking in and for your continued support, love, and prayers that I turn into motivation and inspiration. Hoping for a quiet weekend since next week will see me out of town Tuesday through Thursday. If you've been wondering when a good time to help Michelle would be, Tuesday, Wednesday, or Thursday would be a good guess. Let's face it, she never really gets much of a break.
Love,
Mark
Sunday, August 3, 2003 10:38 PM CDT
Just to keep things interesting, tonight let's start with dessert. Tonight's selection pretty vanilla, literally. Vanilla ice cream and Hershey's chocolate syrup, the classic ice cream sundae. Mmmm, good.
Hard to believe that more than a week has passed since my last report. Was out of town as planned last Tuesday through late Thursday traveling from Milwaukee to New Hampshire and back again to KC. A wonderful trip that reminded me of just how lucky I've been to have wound up with such great people to work with (the Miller gang in Milwaukee and my colleagues at SHB), doing work that I love.
It didn't hurt that Milwaukee was having Chamber of Commerce weather and that our day there ended with a hard-hat tour of the brewery and a wee bit of time at the Miller Inn for some sampling. From there it was on to Manchester, New Hampshire for some good old-fashioned argument down at the courthouse. I learned on this trip that if you're staying in the area the best bet is the Bedford Village Inn and confirmed that driving in the area is at best a risky proposition. The locals blame the drivers from nearby Massachusetts, but I'm not buying it. Consider this information a public service. You've been warned.
Once back home, we enjoyed a rather quiet suburban weekend. The exception, however, was Saturday night when a neighbor and I were given kitchen passes for a late-night snack and a couple of games of pool as a reward for having been left alone to care for our children for three entire hours! We needed a break. Unfortunately, we chose a bar and grill in a strip mall (Dirk's, for the Northlanders out there who also happen to be rednecks) that was having karaoke. A painful collection of head banging music sung primarily by middle aged men that most likely have permanent kitchen passes not of their choosing. A good time in spite of the noise, but again, you've been warned.
On the medical front, nothing to report but continued feelings of physical normalcy and mental determination. Truly a period of feeling well that allows me to pretend for extended periods of time that I do still have my health. Or perhaps it would be better to say that this time serves as proof that the saying "if you don't have your health, you don't have anything" is quite true.
The week ahead promises to be a good one. In town all week and looking forward to the big Shook, Hardy pool tournament Wednesday night. War stories to follow later this week. All remains on track for a return to the hospital on the 12th for the next liver embolization. And thankfully the insurance company has come around and authorized two more treatments (three are needed). Looking forward to getting back after it and getting a report on how Leroy is doing after the direct assault he was subjected to last time.
This next round is supposed to be more aggressive and cover more ground. Knowing what to expect and that I can bounce back after a few days (albeit painful, drug-filled days), still has me fired up to get on with it. The only dark cloud I can see on this horizon is named Foley.
Thanks for checking in and hope you can all enjoy these last few dog days of summer. Fall will be here soon and God forbid should the Royals (the "Royalers" to Max) fade, we still have football to look forward to. And finally, some big news about Edward. As if further proof of the wonderful service he receives from his therapists at TLC were needed, he actually has taken some "steps" in a gait-trainer (think walker). The amazing Mr. Ed never ceases to amaze.
Love,
Mark
Sunday, August 10, 2003 10:45 PM CDT
Everything is still a go for Tuesday's procedure. This will be the second of four chemoembolizations, which target the tumors in my liver by hitting them with some chemo drugs and then cutting off their blood supply by clogging the arteries in and around the affected area. In other words, time to put the patient gown back on and get back to dealing with Leroy and Co.
This next procedure will provide a chance to take a look at how well the tumors treated the first time around have fared. Hopefully, they have suffered mightily. If so, it will certainly make it easier to put up with the pain that comes along with this form treatment, and be my revenge for the misery caused by the first one. As mentioned previously, this time around is supposed to be more aggressive in that it will attempt to cover more ground (most of the right lobe of my liver). As such, I've been told to expect three to four days in the hospital. This time let's hope they're consecutive and not the in-and-out of last time.
Having previously identified the pre-procedure preparation as one of the most troubling aspects of this treatment, I must again address the Foley issue. First of all, I again question why the inventor would want his or her name attached to a device that could double as a fine method of torture. I mean thumb screws aren't called "Jones thumb screws," just plain old thumb screws does quite nicely. Secondly, AFTER the last go-round the prescribing doctor (S&M practitioner?) mentioned an alternative method of bladder control (and as I would later discover a more humane method), i.e., the "Texas catheter."
With such an intimidating name, however, I must confess that I simply nodded in appreciation (no way it could be worse), but couldn't bring myself to ask how the Texan worked. I wondered, why is it called the Texan? Are there size requirements? Do I really need to be humiliated and then get a Foley anyway? I can hear it now, "sorry Mr. Dover the Texan won't work and there is no such thing as a New Jersey catheter, so here's your Foley!" Turns out a Texas catheter is designed for short term (not a play on words) use, which is the case here, and has been described as basically "like a condom." And while I still wonder about the origin of its name, I may call ahead tomorrow (Monday) to make sure they're in stock and to reserve one for Tuesday.
Moving right along, the last week was, as expected, a good one. Worked all week and enjoyed a night out on Wednesday for the office's Fifth Annual Pool Tournament. Sadly, I did not win. Even sadder, I was knocked out of the singles event by a left-handed retiree! The humiliation was tempered only by the knowledge that it made my opponent's year by providing such an improbable war story that the chance to retell it provides him a reason to live. It also didn't hurt that I was on the winning team in the doubles event (yes, the selection of teams was random and it was by complete chance that my partner was last year's and this year's singles champion, just ask my secretary who pulled the names out of the hat).
The weekend found Michelle and I at a concert (Neil Young) Saturday night and me on a golf course Sunday morning/afternoon for my annual golf outing, a groundskeeper's nightmare. The weekend was not so good for Edward, who has a fever, congestion that causes him to get sick (i.e., throw-up), and who had to go see the doctor Sunday morning. And yes, I was foolishly off golfing during the trip to the doctor (sorry, sorry, sorry!).
Well, time to sign-off and get ready to face the week. In the office Monday and then back to St. Luke's on Tuesday. Arriving at 8:00 a.m. and scheduled to have my procedure at high noon. Hoping to gather some good baseball movies since each room has a VCR, but can't get the Royals games! Hope to provide my next update by the end of the week (think Friday). Thanks for checking in and feel free to throw an extra prayer, whole Rosary, good thought, vibe, or karma my way as we take another swing at Leroy.
Love,
Mark
Friday, August 15, 2003 12:06 AM CDT
Howdy partners! Back at the ranch recuperating since yesterday afternoon. And if the southern accent that some of my friends from the North claim to hear in my voice is a bit more pronounced today, chalk it up to the relief I found in not having to repeat the Foley experience.
Yes, it's true, during the procedure I was allowed the alternative method of bladder control this time, the Texas catheter. That said, it is not as if it comes without its own price. You see, while the explanation that it works "like a condom" sounds wonderful enough compared to the operation of the Foley, they failed to mention the adhesive substance inside! So, while the Foley gets you coming, the Texan gets you going.
As for the procedure itself, it went off on schedule at noon on Tuesday. Dr. Gordon was pleased with the amount of work he was able to do this time and once again took another swipe at Leroy, this time from another angle. As expected, however, the more extensive amount of work resulted in more immediate pain after the procedure that simply has to be chalked up to one of those necessary evils. It also means that afterwards (now) a more prolonged period of feeling just plain lousy.
It seems that the post-procedure malaise even has a name, post-embolization syndrome. It explains the "puny" feeling I felt after the last procedure and the slightly more exaggerated feeling of this time. Another variation from the last time is the amount of post-procedure medication.
Was a bit overwhelming to line-up ten different prescriptions on the counter and try to make sense of what to take when. Eight are every day medicines, some of which are taken two, three, or four times a day. Two as needed. And when several of them say "may cause drowsiness," it's no wonder people get in trouble by not being able to keep it all straight. With Michelle's help, I've worked out a written schedule that should keep me out of that kind of trouble.
Anyway, the plan for now is to take it as easy as possible over the weekend and see what next week brings by way of work and/or other activity. Will go back to see Dr. Belt in a couple of weeks and schedule the next procedure a couple of weeks after that. The next procedure will most likely concentrate on the much less diseased left lobe, which will hopefully mean less pain, recuperation time, etc. Remains to be seen if and when the fourth procedure will be scheduled.
As for seeing what happened last time, turns out it's too early. It seems these things will actually get bigger before shrinking as they fight to survive. Consequently, it will be a while until we get some good results (they better be good!).
Hope all is well with you and yours and have a great weekend. Thanks for checking in and for putting up with my continuing need for your support. You'll never know how much it has meant to me to have this ability to communicate with you and receive your kindness and well-wishes throughout this ordeal.
Love,
Mark
Tuesday, August 19, 2003 7:55 PM CDT
Exactly a week now has passed since the second embolization and I can only characterize the recovery as being knocked for a loop. Slow and steady progress over the weekend, a few errands yesterday, and back in the office today. It doesn't help that we're in a week-long stretch of 100+ degree heat, that sucks the life out of everything.
In a close encounter of the lack of judgment kind, one of Monday's "to-do's" was a little yard work. Very little, was the plan. But similar to shoveling snow during chemo back in January, events began to overtake common sense. A fly-by by a hornet, followed by the pain in my liver occasioned by my herky-jerky reaction, brought that job to a sweaty end.
Best way to describe things right now is that I know something is going on in there. I've been fascinated of late with the description of Leroy's size (6 x 6 cm), and keep asking people to look at their rulers knowing that the metric system is still pretty foreign to most of the people I talk to in-person. I think part of my fascination is fueled by the info that these things will get bigger before they get smaller, which is why we have yet to schedule an evaluative scan. And when I imagine it getting bigger, I think what will it bump into?
The result has been that any sudden movements, coughs, etc., cause me to "feel" something. Pain, yes, but only for a brief moment then everything settles back into place. So, back to my original conclusion, something is going on in there and my hope (expectation) is that it is good.
Other than that, just some post-procedure/medicine hangover. Nothing a little mid-afternoon nap can't cure. As such, expect to be fully back-up and around by week's end if not sooner. Will have to be on my toes tomorrow over lunch as Edward will be stopping by for a visit while mom goes to her monthly Board of Directors meeting at his school, The Therapeutic Learning Center.
Plans call for a follow-up visit with Dr. Belt next week and the next procedure a couple of weeks after that. As always, thanks for checking in and a special thanks to Kari Grace who bravely volunteered to baby-sit all three boys here at home so Michelle could make a brief escape. Also coming up next week, a trip to NY (note to self, pack candles) during which I hope to take in a game at Yankee stadium!
Love,
Mark
Sunday, August 24, 2003 8:54 AM CDT
The work-week highlight was, not surprisingly, Ed's visit on Wednesday over lunch. A two-hour reminder of why we have to do what it takes to get better. And what it takes right now is putting up with some pain in the liver (and my right shoulder too).
Wednesday through Friday required careful pain management, primarily with medication. The painkiller of choice for now is my new friend Roxy (Roxicodone). Roxy is to be used only for break-through pain, and as a morphine-type drug, is quite effective. I was bit shy with Roxy at first, but soon discovered that by taking the maximum dose noted on the bottle that relief was nearly complete, sleeping was a breeze, and I could feel pretty damn good for a while.
Getting to the point of effectively managing things required some follow-up consultation with Dr. Gordon, the doctor that performs the embolizations. He is surprisingly responsive and even called back unsolicited on Friday afternoon just to see how things were going. With his help and further explanation of what's going on inside my liver, the prolonged period of recuperation this time became easier to accept.
Roxy does have some interesting side-effects. Shortly after taking them there is the sweating. She also has a tendency to make me a bit talkative (i.e. diarrhea of the mouth) followed by a period of that good old get-the-hell-away-from-me feeling. Dreams have become a bit more vivid including the one where I was hanging out with Warren Buffett in KCK at the grand opening of the Nebraska Furniture Mart! (an actual event minus my participation).
Made it through Saturday without turning to Roxy until bedtime. She's so good in bed I just couldn't resist. Besides that, Michelle made it out to dinner with friends Saturday night requiring me to do the heavy-lifting (figurative and literal) involved in getting Max and Ed to bed. My first real physical activity since the procedure and I could feel it right in the liver.
For now, coughing, burping, hiccupping, and sneezing are all adventures. Deep breathes are also not a good option. The problem, to be specific about it, is that in his agitated and presumably swollen state, Leroy is pushing on my diaphragm, which in turn pushes on various nerve bundles. Most of the pain last week showed up in my right shoulder. Nothing wrong with my shoulder, but given the various nerve connections involved, that's where the pain was.
The week ahead should find me on the road again. Leaving Monday for New York and, yes, the Yankees are on the agenda for Monday night. I must confess that while currently teetering on the edge of the Royals' bandwagon, as a small child I was quite the Yankees fan. I still have a scrap book of newspaper clippings summarizing Yankees' games, but that all ended with the untimely death of my all-time favorite Yankee, Thurmon Munson. History aside, with the recent pounding the Yanks put on KC, I'll be rooting for Baltimore on Monday night.
Back to KC Wednesday night. My follow-up visit with Dr. Belt is set for Friday morning at 10:15. At that time we should schedule the next embolization for sometime in mid-September. Tonight, dinner with Dave and Mary Beth and a couple of his girls (Michelle and Laura) with their significant others. Basically, a Dave and MB appreciation dinner.
Well, that's it. Thanks for checking in and for all your continued love, support, and prayers. Hope to see you soon!
Love,
Mark
Sunday, August 31, 2003 2:51 PM CDT
In our last episode, the recovery from embolization number two continued with the assistance of the ever-reliable pain-killer, Roxy (available by prescription only!). By Thursday the 28th I was even able to forego taking her at bed-time. I recently discovered, however, that Leroy's persistence has forced me to keep Roxy around a while longer.
The week started off as planned on Monday with a trip to New York. Worked in a Yankees game Monday night, the Statue of Liberty on Tuesday, and managed to squeeze in some business Tuesday and Wednesday. And in spite of my best efforts to build in rest time, by the end of each day in NY Leroy was agitated and causing enough problems to require Roxy's company each night before bed. Back to KC late Wednesday evening and again needed a visit from Roxy to get comfortable enough to sleep.
This whole business of being able to feel something going on inside my body has changed things in a subtle yet significant way. Specifically, since any type of exertion or sustained activity really lets me feel Leroy's presence, it is no longer possible to forget him. I've been very fortunate throughout this ordeal to be symptom free. The only problems I've had have been related to the treatments. I rather enjoyed not having a constant physical reminder of my cancer, but fear that those days may be over.
That said, Thursday and Friday nights were Roxy-free. The pain was diminished, but there is still the problem of some general tiredness and feeling sort of "blah." None of the above, however, came as a surprise to Dr. Belt when we discussed things Friday morning. He attributes the extended recovery to the extent of work Dr. Gordon did during the last procedure and like Dr. Gordon, expects the next procedure to be less problematic since we'll be working on the left lobe of my liver, which is much less diseased than the right. We'll see.
After a couple of relatively calm nights at home, Saturday brought much excitement. First there was my fantasy football league draft in the morning. Next came seeding the lawn in two areas that for reasons other than the 100+ degree heat were bald enough to require new top soil. The heat, however, has been replaced by two days of rain, meaning I sit and hope the dirt and new seed don't all wash away. Combine that with a trip to the new Great Wolf Lodge in KCK and a couple of hours in its water park with Max, Ed, and our friends the Allens and their two kids, and you get the recipe for a Saturday night with, you guessed it, Roxy.
So that's pretty much where it stands. There is a price to be paid for physical activity, but the activity threshold appears to be going higher. As for scheduling, the next procedure should be September 16th. Still need to confirm with Dr. Gordon and the hospital, but Dr. Belt sounded pretty confident the date would hold.
And finally, a Maxism. After a public service announcement on TV about being prepared in the event of a fire, we asked Max a few questions about fire safety, etc. What do you do if your clothes catch on fire? Answer, roll on the ground. What do you do if you need a fireman or policeman? Answer, call 911. So far, so good. Then the tough one: Where do you live? Answer, Max's world. It won't be much help if he ever gets lost, but pretty damn funny at the time.
As always, thanks for checking in and for your continued love, support, and prayers. And a special thanks to those brave souls that leave a bit of themselves behind by writing in the guestbook.
Love,
Mark
Thursday, September 11, 2003 10:28 PM CDT
Hello out there. I've let so much time pass since the last entry I feel as if I should introduce myself. You might remember me as the guy that was hanging around with Roxy. That said, just wanted to let you know that Roxy and I have broken it off and I couldn't be happier. I fear, however, that we will wind up being one of those annoying on-again, off-again couples that make you shake your head and wonder why they bother.
The official break-up didn't occur until about September 1. Since then, have regained strength and found Leroy to be much less of the ever-present thug that he'd become. And best of all, while it hasn't disappeared, the sensation of feeling Leroy push against my diaphragm and making things like deep breathing a chore has diminished. This is a good thing.
Coming up is procedure number three. And just like last time the perfect date that Dr. Belt and I selected (the 16th), fell through due to a scheduling snafu at his office. Just a small matter like forgetting to check with the doctor that performs the procedure, Dr. Gordon. We're now a go for Friday the 19th. That's right, a Friday, yuck! It will no doubt mean a weekend in the hospital, but since this procedure is to work on the left lobe of my liver, which is much less diseased than the side where Leroy resides, we're hoping for much less pain and in turn a much faster recuperation. Hoping being the operative word.
In other news, with my recovery from procedure number two the last week has been pretty darn good. Saturday night we made it out to dinner with our friends and next door neighbors the Youngs. We enjoyed the services of the ultimate designated driver, Five Star Livery, to and from dinner on the Plaza. Mr. Youngs and I got ourselves dropped off at a local casino for some gaming and at the end of the night found ourselves at the other end of the livery service spectrum when we negotiated a ride home with a fellow gambler and his wife in their lime green cab. We're talking ma and pa Kettle fresh from the slot pits and the faint sound of banjo picking in the distance. Every possible warning light on the car's dash was lit (check engine, change oil, low fuel, etc.) as we careened towards Parkville. The scariest moment, however, had to be after we got out and the car died in our driveway! Thankfully, it started and we pointed them in the direction of the nearest gas station. The lesson from this experience: never get in a lime green cab with a couple that just poured themselves out of a casino.
This week also saw the beginning of the NFL's regular season, which I enjoyed immensely from my seat at Arrowhead with brother Dave (more paybacks). The Chiefs won so KC has been in a good mood all week. Also took in a Royals game with a gang of guys on Tuesday night and noted that there is now plenty of room on the Royals' bandwagon the wheels of which are almost completely off. As for work, the highlight of the week was a trip to Huntsville AL on Monday. Down and back the same day for an argument that wound up being one of those times that the prudent course was to remain silent (not an easy task for a lawyer that had traveled all day and prepared for a battle) and avoid snatching defeat from the jaws of victory.
Ed and Max are in full school mode and Max loves getting to go to Ed's school two days a week, which means he's somewhere every day of the week. Ed even went on a field trip today and picked some apples right off the tree! Michelle is in full taxi cab (not the lime green kind) mode and has become a one-woman speaker's bureau for Ed and Max's school the Therapeutic Learning Center.
And finally, for tonight's snack I've gone for another classic -- the Nilla Wafer. Not the wanna-be Vanilla Wafer in a similarly colored box with an elf on it or even the "low-fat" version of the classic, just the plain old Nilla wafer. With, of course, a diet Pepsi (yes, I know it makes no sense, but in the airport on Monday they were giving away gigantic Baby Ruth's with the purchase of Diet Coke, which makes no sense either).
Thanks for checking in and for the words of encouragement in the guestbook. And thanks for all of your continued love, prayers, and good thoughts. Go Chiefs and God bless us all on this sad 9-11 anniversary.
Love,
Mark
Friday, September 26, 2003 10:58 PM CDT
With most all of the fog now lifted from procedure number three's recuperation, thought it high time to get back in here and write an update. I was mortified to see that it had been two weeks since the last update. But then I remembered why I didn't get an update in before the last procedure on the 19th.
You see, I was debating whether or not to conduct a reader's poll on which catheter to use this time. There's, of course, the old rubber hose method (Foley), or the like-a-condom-with-superglue-on-the-inside method (Texan). By the time I concluded that voter motivation would most certainly invalidate any results, it was time to go back to good old St Luke's.
It all started out so wonderfully. A quiet drive with a cup of coffee (they're really not that serious about the fasting thing are they?), an effortless check-in at admissions, and a cozy little room to get settled into before they came for me. There was also a nice visit from Dr. Gordon that should have been my first hint at trouble.
Dr. Gordon arrived about 11:00 a.m. to go over things and once again confirm that he expected a short stay since his plan was to only work on the left lobe of my liver where things still look pretty good. He then announced they were ready to go, apparently unaware that everyone else was working on a 1:00 p.m. start, which meant that I had not received any of the pre-procedure meds or even the catheter. That got straightened out (allegedly), but things really then started to move.
My nurse that day, Alyson, was a delightful young woman along the lines of Cameron Diaz, and to whom I had never been previously assigned. She thought to get things rolling she'd start the catheter, but halfway through the sentence stopped herself and said "aren't you the one that prefers the condom type?" Normally I would note this as good customer service. Sort of like walking into your favorite watering hole and having "the usual" served up before you even settle in to your chair. But remember, she's never been my nurse before and I've only had "the usual" one time. So, I sank back into bed feeling estopped from making any choice other than the superglued condom and began calculating how many (I don't even want to think content) conversations it must have taken for Alyson to learn about my catheter preference.
Next came the transportation adventure. Appearing in my room with a stretcher to wheel me down was Alicia. She may have been all of 100 pounds and was alone. In a misguided attempt to reassure, she glibly stated that normally her staff does this sort of thing (so where the hell are they), but that she could handle it just fine. Well, at one point we were twisted in tubing with me holding the IV pump over my head like the Stanley Cup. Not only that, she was on the opposite side of the bed from the stretcher that I soon discovered did not have its brakes engaged. Then when a curious nurse passing by asked Alicia if she needed help, she of course said no (she does, after all, have a staff). The panicked look on my face, however, told the nurse that maybe she should step in anyway.
We somehow made it to the procedure room, which by now is taking on a familiar feel including some of the people there to do the prep work (shaving certain areas, blankets, oxygen, meds, etc.). There was one unfamiliar face there, a woman in an American flag hairnet and a Russian accent that seemed a bit nervous/overwhelmed by the efficient operation of the procedure room staff. She never introduced herself so I just call her the Russian.
As it turns out, the Russian is some sort of doctor-in-training/med student. She was given the job of getting a needle into my femoral artery, which is then where the flexible tubing that goes up to my liver is inserted. I remember never having felt so awake during a procedure as the 30 seconds (or was 18 hours) the Russian tried to puncture that artery. I even recall telling Dr. Gordon, "gee I don't ever remember having PAIN during this part of the procedure." This only caused the Russian to grab and try harder. After some more squirming and an almost argument with the Russian over whether or not she had fingernails under those gloves, Dr. Gordon took over and went about his business.
And now for the recovery. At first, things seemed on track for getting out on Sunday the 21st. That all changed once I had a few bouts with nausea on Saturday night. To make things worse, particularly to the doctors, I began running a temperature and the fear was that I might be developing an infection. There was also the usual pain to be managed that when combined with the nausea resulted in the combination two old favorites, Ativan for nausea and Roxy the pain killer. The three of us in bed together for a couple of days was quite an experience. Yes there were the bizarre dreams that didn't always stop when I woke, but all I can say is we'll always have Kansas City.
Headed home Wednesday afternoon with Brother Dave's help. Took it easy on Thursday and passed through the office on Friday to assess damage after being gone for a week. Was a bit taxing considering I still need Roxy, which I had to work around (i.e. delay taking) to get back to my car (thanks, Sam) and drive it to Parkville.
With so much to cover, this entry has been a bear to edit. At it for a couple of hours now and it's time for bed (1:20 a.m. to be exact). Besides, Roxy awaits. (somebody remind me to tell you all about her sister Oxy!
Coming up next is a visit with Dr. Belt on October 6 just to make sure recovery is continuing and to schedule a CT scan. The scan should be sometime in mid-October and will hopefully bring positive news and a new direction for treatment. As always, thanks for checking in and for all of your continued love, support, and prayers. And if you may have come to the hospital to visit, thanks and I hope we had a good time.
Love,
Mark
Monday, October 6, 2003 10:36 PM CDT
After spending a lot of time at the doctor's office today, still not a lot to report. Dr. Belt did his usual exam and visited with me to answer questions and shoot the breeze. He did not seem particularly concerned about the continued soreness in my mid-section or my low-energy general state of being (can't say I've ever been described as high-energy anyway).
We are all anxious, however, to get some feedback on how the embolizations have done in striking a blow against Leroy and Co. To that end, we have scheduled a CT exam for October 20th at 10:00 a.m. The new scan will be compared to the old ones and a report prepared by the reading radiologist. The report will be forwarded to Dr. Belt and we will meet with him on the 27th to discuss. Another, as they say, "decision point."
I've avoided asking Dr. Belt to speculate about things mainly because it's so difficult to do that it almost seems unfair. Besides, we have more facts to gather and assuming they'll be good ones, my chances of getting a positive forecast are better if I wait. Regardless of how we've done in the liver, however, I always have in the back of my mind the realization that this is all supposed to have started in the pancreas and the embolizations only treated the liver. So what does that mean? We'll just have to figure that one out come the 27th.
After the 27th will likely come another visit to M.D. Anderson Cancer Center in Houston to get their perspective on where we've been and where we should go. I'm sort of hoping that we've done well enough that any additional treatments can wait until after the holidays. I somehow doubt, however, that my doctors will be overly enthused about waiting around and that they'll want to forge ahead.
Since my last report I have done a bit of traveling. Last Monday through Wednesday found me in DC and Milwaukee. Off again on Friday for San Antonio, TX and our annual SHB partnership meeting. A grueling couple of days of rafting, golf, dinners, naps, etc. Back home on Sunday to see the incredible finish to the Chiefs/Broncos game that left the Chiefs all alone atop the AFC West at 5-0. Broncos’ fans, all I can say is waaa, waaa, waaaa! And Dave, you're welcome for the tickets.
Also coming up is Max's favorite holiday, Halloween. The decorating began more than a week ago and the little heathen can hardly wait to pick a costume out for me. As for excitement, at 4:00 a.m. on Friday morning Edward pulled his feeding tube out of his stomach. Michelle discovered the mishap while checking on his cough. She whisked him off to Children's Mercy ER and was back home by 6:15 a.m., new feeding tube and all. Just the way you want to start the day on your way out of town, or worse still, as you prepare for a weekend alone with Max and Ed. Somehow, Michelle pulls it off.
One thing I forgot to mention is that we discovered today that the "port" implanted under my skin in my chest apparently has a clot in it. When the nurse attempted to draw blood from it today, none was to be had. They'll work on that when I go back in on the 27th.
Well I think that's about it for now. Will hopefully get past this soreness, build up the energy, and have a couple of normal weeks between now and the 27th when we find out just how bad of a whoopin Leroy and Co. have taken these past three months. Time just continues to fly and I still feel fortunate that the only problems I've had were caused by the treatments and the cancer has yet to pop-up in a way that manifests itself in a symptom. And this almost a year after diagnosis last November.
Please keep the prayers, get-well wishes, and good karma coming for there is much to be done. Thanks for checking and I'll keep you posted.
Love,
Mark
Tuesday, October 21, 2003 8:07 PM CDT
News from the Western front. As planned, I had a CT scan Monday morning. Nothing too exciting, just drink some really bad "lemonade" for an hour and then lay on a table as it passes you in and out of a donut. No real chance to assess results as no doctors are present to officially interpret.
Interestingly enough, the technician running the show from behind the curtain was a high school classmate of mine. She had the advantage of seeing my name and age, which allowed her to put it together that yes I was "that" Mark Dover. A very nice visit, but her obvious concern for my future was a bit unnerving. So, what next?
The films from the scan will be read by a radiologist (a partner of Dr. Gordon who did the embolizations) who will compare them to some prior scans (I have quite a collection at this point) and write a report that will go to my oncologist, Dr. Belt. We'll meet with Dr. Belt next Monday to go over results and talk about options/next steps. I probably could have gotten in a bit sooner, but why risk ruining a weekend that might see the Chiefs go 8-0! Thank you Denver (still crying?) and Green Bay (sorry cheeseheads), we couldn't have done it without you.
Bottom line, stay tuned for next week's episode that will answer the burning question of did JR (a/k/a Leroy) get shot? You have to have a few years under your belt to appreciate that last line. And speaking of years under belts, October 8 was birthday number 42 for the author. We celebrated with dinner and chocolate cake at Dave and Mary Beth's along Michelle T., Aaron, Laura, Clay, Michelle M., and the boys. Adding to the birthday parade on the 16th was Cori who celebrated Sweet Sixteen followed shortly thereafter on the 18th by none other than Aunt Mary Beth (years withheld out of fear of retribution).
On the subject of birthdays, let me say this. There once was a time that birthdays would come and go without much thought being put into them. That was not the case this year. Rather, mixed in with the celebrating was the realization that we only get so many. How many is a mystery beyond our control. I accept all that as simply part reality and part faith, both of which are very liberating concepts that can and do co-exist. I mention these things as a way to share, in part, the emotional turmoil that accompanies this disease I have. And just to make sure I don't get "preachy," I'll conclude by suggesting that each birthday is a gift to be enjoyed and celebrated.
Now, back to the present. Feeling relatively normal and expecting that to continue until the next treatments (whatever they may be) begin. As I mentioned last time, I hope to avoid anything drastic until after the fast approaching holidays (hope I don't stress anyone out with that comment). I will also start working on another visit to M.D. Anderson Cancer Center in Houston that will probably not take place until after December 1 (insurance reasons too boring to detail). Considering a tactful way to request a different doctor down there given my current doc's lack of bed-side manor. Any suggestions will be appreciated.
Well, time to go see if the fish can beat those damn Yankees in game three. By the way, I was in Chicago for games 6 and 7 of the NLCS. I was convinced there would be a lynching of the infamous fan and then watched game 7 with my niece Lisa at the Billy Goat Bar and Grille in Wrigleyville where emotions ran high and I drew some suspicious looks as the only person in the place without Cubs clothing or colors (rectified later by a cap purchase). Great fun. As always, thanks for checking in and keep your fingers crossed, prayers coming, or any other effort to send good karma that for Leroy means big trouble.
Love,
Mark
Monday, October 27, 2003 10:26 PM CST
Hip, hip, hooray! Finally, some good news. The embolizations did their job and caused some significant reduction in tumor size. In particular, Leroy took a significant hit going from 8x8 to 4x4 cm. Several other tumors also took hits.
This afternoon's appointment started with me meeting with a nurse to determine if my port had a blood clot in it. Turns out it is now clear and working fine. She couldn't resist, however, taking a peek at the radiologist’s report and spilling the beans that things had definitely improved. I promised to act surprised when Dr. Belt came in to deliver the official news.
Dr. Belt arrived and looked as if he were an obstetrician about to deliver the good news that Junior was fine. We then spent quite a while discussing options for what to do next. We discussed surgery, implanting radioactive seeds, microwaving the leftovers, and even doing another embolization. He did not sound particularly enthused about removing a diseased portion of the liver and letting it regenerate, but admitted that he was no expert in the area.
Turning to the root of the problem, the pancreas, he sounded much more comfortable with the idea of taking a part of it out to remove the tumor inside of it. A major operation, but perhaps a good option now that we've "reset the clock" in large parts of the liver. Overall, his plan is to meet with a surgeon and a radiologist (Dr. Gordon who performed the embolizations) to develop options and to call me later this week to discuss.
Before leaving the complex, I wanted to try and recover the radiological films that I dropped off before my most recent scan that revealed the good news. Per Dr. Belt's suggestion, Michelle and I went to the Imaging Center where the scan was done to see if we could locate them. We checked in and shortly thereafter a young man asked me to follow him into the back. Once out of the waiting room, he informed me that Dr. Gordon was in and that he wanted to see me. Thinking that I was simply going to pick up films, Michelle went to get the boys who were visiting the Youngs, our neighbors.
After winding our way through various exam and procedure rooms, we arrived at a dark, interior room with huge light panels suitable for viewing x-ray and CT films. Dr. Gordon was in the corner with at least 16 of my films up on the viewer. He too was in a very good mood and I don't think it was solely because the Chiefs are 8-0! As usual, he began fumbling through films, pointing at various blobs that he assured me were signs of progress, and talking about options and things in general. He loaded me down with every film and report he had available and sent me on my way. Something tells me the people in the film library will be looking for me tomorrow.
All in all, this was a very good day. Progress has been made that we can see and it was great to go back to the office and share the news. Thanks to all of you that made this happen with your prayers, good karma, and well-wishes. The next move is still up in the air, but I will probably go ahead with plans to visit M.D. Anderson in Houston. Looking forward to Dr. Belt's call and his recommendation that based on past experience is usually pretty darn good.
Perhaps it's all the excitement of getting some good news or the late night associated with going to the Chiefs game Sunday night with brother John, but I'm pooped. Time to call it a day, but let me say again, thanks for all the love, concern, and prayer you've sent my way these past several months. It makes a huge difference to my ability and/or willingness to forge ahead. I'll keep you posted on what lies ahead, which could be very interesting!
Love,
Mark
Thursday, November 6, 2003 9:15 PM CST
For those of you that may have recently seen me, you may have noticed a certain glow that wasn't there a few days ago. The explanation is not, however, as simple as the good news of Leroy and company's shrinkage that was detailed in the last journal entry. In addition to the good news, I'm positively glowing as a result of the modern miracle of nuclear medicine.
You see, since my last update I've talked with Dr. Belt after his talk with a surgeon and Dr. Gordon, the radiologist. Based on their discussion, we are now seriously looking at a surgical option that would involve removing the right lobe of my liver as well as the portion of my pancreas that is believed to be the home of the original tumor that caused all the problems in the liver. In other words, we're going after Leroy and his entire disgusting, vile, sneaky family.
Not sure yet about the details since there was the small matter of looking for any further metastasis that had to be taken care of before I'd even meet a surgeon. And that brings us back to nuclear medicine. You see, Dr. Belt ordered an Octreotide scan, which involves injecting me with a radioactive substance to which the synthetic hormone octreotide has been attached. After the injection, I was scanned with a "camera" that looks for places where the octreotide and its radioactive taxis have gathered since that will also be the place(s) where my particular type of cancer can be found.
The scan took place over Wednesday the 5th and today, Thursday the 6th since readings/pictures are taken at the four and twenty-four hour marks after injection. It generates pictures that will have bright spots to show where the tumors are. Assuming they are confined to where they're supposed to be (right lobe of the liver and the pancreas), surgery to remove it becomes an option that will need some serious consideration. So, the glow can in part be attributed to my radioactive state.
I'm hopeful that the scan will not reveal any cancer in new areas that might complicate next steps. I had an octreotide scan earlier this year that failed to reveal any additional locations and had a CT scan in May that included my chest that similarly failed to show anything. If things have indeed behaved themselves and stayed put, I think the thing to do will be forge ahead and take a shot at getting rid of most all of the cancer. I say "most all" since there will still be some cancer left behind in the left lobe that we really can't mess with since the left lobe will have to do the entire job liver while it waits for the right lobe to regenerate.
That's right, regenerate. The right lobe of my liver will actually grow back. A concept that has intrigued several of the authors leaving notes behind in the guestbook. I must say, it's pretty exciting to think about growing a new half a liver that's cancer free and in need of breaking in. And what's even more incredible is that it will apparently grow back in just a couple of months. If things all fall into place, I could have fresh liver in time for the Chiefs trip to the Super Bowl!
Results probably won't be available until Monday. Consequently, looking forward to a relatively quiet weekend although there is the small matter of watching the Chiefs beat up on the Browns Sunday afternoon. Things could start to move pretty fast after that since waiting around never seems like a good idea when you have cancer that needs to be dealt with. I've started the process (sent an e-mail to my Patient Affairs Specialist, what a job title) of getting back in to M.D. Anderson for a consultation with Dr. Ajani (the guy with the personality of a dish rag) and am looking into also meeting with one of their surgeons.
In other news, Halloween was a big hit as expected. Max (a/k/a Batboy), Ed (Blue from Blue's Clues) and I did some trick or treating with the Youngs family. An appropriately chilly evening that found us wandering the neighborhood with the other suburban dads, beer in one hand goblin in the other. Returned home with the loot to a Crockpot full of Michelle's delicious chili.
Finally, let me say again how wonderful it was to share last week's good news. It inspired some great guestbook entries, but to my sisters let may say that I never noticed it not being open season on Mark! You'd think after 42 years, they'd get a little bored of laughing at my occasional misstatements/mishaps. Tis a heavy burden to be "the baby" of seven. And besides, I've got plenty of people at Shook, Hardy for that kind of abuse.
As always, thanks for checking in and for keeping me in your thoughts and prayers. Stay tuned for some more news relatively soon (i.e., Monday unless there's a good game on that night).
Love,
Mark
Wednesday, November 12, 2003 9:43 PM CST
Although doctor housecalls may be a thing of the past, nothing says they can't call you at home to give you test results. After a couple of days of patiently waiting for word from Dr. Belt on the results of last week's octreotide scan, I was getting a bit anxious. The waiting ended tonight at about 8:30 p.m. when he called to advise that in fact my cancer had maintained its well-behaved ways and was only found in the pancreas and liver. Exactly what I was hoping he'd say.
This means that I will now go meet with a surgeon (Dr. Helling) to discuss an operation that will involve removing the right lobe of my liver and the "tail" of my pancreas. He is the same doctor that reviewed my films with Dr. Belt and Dr. Gordon in late October when the plan to operate was first hatched. Consequently, he's somewhat familiar with my situation and the meeting will be to get the details of just what would be involved with the surgery as they envision it.
This is good news indeed. For me it's even better than simply kicking Leroy around and shrinking him since this procedure would get most of the cancer completely out of my body. And to me that is getting close the "C" word - cure.
Perhaps it is the nature of their practice and/or the normally grim outlook for metastatic pancreatic cancer patients, but every doctor involved in my treatment has made it a point to tell me "now you realize, we're not talking about a cure." As recently as two weeks ago it happened again while I was meeting with Dr. Gordon to go over the positive results of the embolizations. Whatever the reason, I've chosen to stay focused on moving forward by keeping a positive attitude, not wasting any time asking "why me," gathering information on options, and then making a choice to do whatever it is that gives me the best chance of hanging around for another 42 years.
The operation will leave behind my liver's left lobe that does have cancer in it. Not a lot, but still a couple of spots. Appears to be unavoidable given that I have to have a functioning liver, or at least one-half of one, to live. Dealing with the leftovers will just have to be figured later.
I'm so damn happy that I just polished off my second piece of homemade pumpkin pie. Besides, it may be time to bulk up again in light of the likelihood that surgery is in the cards. A task I greatly enjoyed during chemotherapy, but maybe I should wait to see what the surgeon has to say about my pie-a-day plan.
And once again, thanks to everyone for their prayers, kind thoughts, good karma, and for simply asking how I was doing. I would hope to one day understand why all this has happened, but realize if that was really possible we wouldn't need Faith. So, here's to the keeping the Faith and moving forward!
With Love,
Mark
Sunday, November 16, 2003 11:15 PM CST
Did I happen to mention that things may start to move rather quickly? After getting the word from Dr. Belt on Wednesday night that there does not appear to be any further metastasis and that surgery was now an option, I called the surgeon's office Thursday morning. I was surprised to hear them ask if I could come in the next day, which was Friday the 14th. As instructed, Michelle and I reported in to Dr. Helling's office for my Friday afternoon appointment.
Only 45 minutes behind schedule, we met Dr. Helling in your basic tiny exam room. Me lugging around about ten different sets of radiology films and Michelle with pen and paper. I was also armed with some Med-Line research (thanks, Dee) about Dr. Helling that shows he's been around the block (and the abdomen) more than a few times. In fact, he wrote in one article that as of 2002 he had done 147 liver resections.
The best way to describe Dr. Helling's appearance is Harry Potter in his mid-50's. A bespectacled man that was fresh from surgery when we met and still wearing his scrubs. Not a chit-chatter, but still very likable and obviously confident in his plan. As for his plan, he matter-of-factly explained that after discussing matters with Drs. Belt and Gordon and after reviewing my scans, that he was planning a dystal pancreatonomy and liver resection. In other words, he'll be cutting out the right half of my liver and about a third of my pancreas.
As we discussed matters further, I asked him if he had seen in my records a reference to gall stones (I had). Again very matter-of-factly he said "oh well, your gall bladder is coming out." This being news to me, I asked him why? The answer was simply that it's in the way and needs to come out so he can get to the liver. Thankfully, I have no sentimental attachment to my gall bladder and will chalk it up to collateral damage.
A little later we happened across the small matter of my spleen. It too apparently has to go since it's so close to the pancreas and according to Dr. Helling is probably involved with the tumor in the pancreas. Not exactly sure what "involved with" means in this context, but assume that it's some sort of sordid relationship that's going to cost my spleen its place in my body. This I'll chalk up to guilt by association.
We ended our visit with a very favorable impression of Dr. Helling and without learning of the impending loss of any other organs. He calls this a "major operation" the primary risk of which is blood loss. The surgery itself will take six to seven hours and require something around ten days in the hospital before being released back into the wild.
Being favorably impressed with Dr. Helling and having already gotten comfortable with the idea of cutting this crud out, we took the opportunity to schedule it for December 17th. Consequently, yet another strange holiday season is upon us. But first, I have also now heard back from M.D. Anderson in Houston and have an appointment to consult with them set for December 1.
Barring any unforeseen advice/opinions from M.D. Anderson, looks like we're forging ahead on the 17th. That said, I am also going to look into the possibility of having the surgery in Houston, although it would be my preference to have it here, should they try to convince me that I'd be better off doing so. The obvious down-side is recuperating so far from home, but this is the sort of thing you want to make sure you get right the first time.
With me going to Houston on the 30th for my appointment on December 1, our plan to stay close to home for Thanksgiving appears to be a good one. Michelle volunteered to cook for the local Dovers and will no doubt be making her now world famous pumpkin pie, the best I've ever had! I shouldn't be surprised about this latest culinary masterpiece since it's her grandma's recipe. And no, I never had a chance to run my pie-a-day theory by Dr. Helling.
A strange feeling to look down and imagine them cutting away at my insides (sorry, hope you weren't eating). The feeling is compounded, of course, by the fact that I still don't "feel sick." I have the feeling, however, that if we hadn't stumbled across Leroy and his pals last year they would have done their terrible best to make sure I felt sick. So, better them than me!
If you've hung in there long enough to be reading this paragraph, you'll be happy to know that Max and Ed are both enjoying their days at TLC. Michelle is still active on the Board and is helping to organize the Groundhog Run through some commercial underground caves, which is the school's major annual fundraiser. It features a 5K walk/run that will include Team Dover (Michelle, Mary Beth, Michelle T., Laura) sponsored by Grandma Walter.
Looking ahead, after going to Houston on the 1st, I'm off to Philadelphia for some business and back on the 3rd. Will then try and get things in order in anticipation of the surgery and the recovery. I hope to be home by the end of the year at the latest. Going back in to work after that will be "as tolerated" and my hope is to be back to full strength by Groundhog Day (see a theme here?) in February.
One amazing fact I left out above is more info on liver regeneration. It apparently starts about a week after the surgery and is complete in two to three weeks after it starts! It only grows back what is needed and they have noted that my left lobe is already enlarged, probably in recognition of the damage done on the right side by Leroy and Company.
And finally, the surgery and recuperation will be a time that tries men's (and women's) souls. The good news is that the time I'm supposed to be hospitalized coincides with the boys being out of school, which eliminates the need to run them back and forth every day. But if you've ever wondered what you could do to help, figuring out ways to give Michelle a hand or a break during that time would be it. Because for my part, after we cut this crud out and I get out of the hospital, I plan on getting back to "normal." There is, however, still the matter of the cancer in my left lobe, but more on that later.
Anyway, thanks for checking in. I for some reason feel like this is the home stretch and the time that your prayers, good karma, and words of encouragement will be most needed. As for tonight's dessert, M&Ms, a Kit-Kat, Miller Lite, and other Halloween leftovers. Sound familiar? A lot like the election night 2002 snack that got me to the doctor last year and started this whole mess. Oh well, old habits die hard.
Love,
Mark
Friday, November 28, 2003 9:59 PM CST
What an extra special Thanksgiving it was. Couldn't have been much better. Home cooking at home (including that pumpkin pie, again!), loved ones to enjoy it with, and a next door neighbor with a new pool table. Hope yours was wonderful too, and that you're now prepared for the mad dash known as the holiday season.
Not much new to report and besides, pretty hard to top the last update that summarized the visit with Dr. Helling, the surgeon. On my way to Houston and M.D. Anderson on Sunday for another consultation on Monday, and from there will be traveling on to the Northeast for business.
I did have one visit to Dr. Belt's office last week for some vaccinations. It seems the spleen does have some purpose and since mine is coming out I needed a couple of vaccinations. For good measure and to make my impersonation of a pin cushion complete, I had a flu shot and had my port accessed and flushed.
My shots were administered in the chemo treatment room. It's the place with the hospital issue recliners lining the outside of a room the size of a standard classroom. Except for the nurses, all new faces. Some looking scared, some settled in and napping, and others pretending to be unphased by their current predicament. It has probably been six months since I last sat in one those chairs.
Seeing those people, most of them probably just getting started with their treatment, made me quite uneasy. I wasn't sure at the time why I was so uncomfortable, but now suspect that it was because it took me back to my first treatments and the total state of shock I stumbled around in for the first couple of months after the diagnosis. I wanted to offer some sort of insight or comfort, but realized the best I could do under the circumstances was hope and pray that each one of them is fortunate enough to enjoy the love and support that I've been blessed with.
Two paragraphs ago I thought this would be my shortest entry yet. Memories triggered by the treatment room have dashed those thoughts, but reminded me again of what I have to be most thankful for over the last year. Your love and support, of course. Thank you.
O.K., that's it for now. More next week after returning back home including a report on M.D. Anderson. The only other thing I can think to add are my recuperation goals. They are: 1) be home by Christmas; 2) watch each and every bowl game known to man; 3) attend both of the Chiefs home playoff games; and 4) be back to full strength by Groundhog Day!
As always, thanks for checking in.
Love,
Mark
Sunday, December 7, 2003 11:59 PM CST
Once again, chaos reigns supreme. My visit to M.D. Anderson in Houston on the 1st did not go as expected. Rather than validate the plan to go after my cancer with a surgeon's knife, Dr. Ajani did his best to convince me that now is not the time. So, here I sit with my pumpkin pie and diet Pepsi not knowing what to say or do.
It seems that Dr. Ajani is "not convinced" that surgery is the way to go for me. In my stunned state I sat and tried to listen to his reasoning and that there are two paradigms, one where surgery is called for the other it is not. And of course, the comments that stay with me the most are the most negative. Like, for example, his speculation that I may well have metastasis to the bone, even though it was undetected in last months scans.
I attempted to make my case by noting that even though the operation being considered leaves behind a small amount of cancer in my left lobe, it was still worth it given that 95% or more of it would be gone, I'd be regenerating half a liver that would be disease free, and it's still a slow growing cancer. He responded by wondering aloud whether under similar circumstances they would then recommend this course for the next patient, and the next, and the next. To that point I remember thinking who cares what you recommend for your next patient, isn't everyone different? He did acknowledge that each patient must be dealt with individually before making his comment, but I think it was Professor Ajani (not making that up, M.D. Anderson is part of the U of TX) talking and I imagined my case being part of a final exam. The "A" papers will be the ones not recommending surgery.
Another odd exchange took place when I asked if a metastasis mestasizes. You see, what we're talking about leaving behind in the left lobe is a metastasis from the pancreas and the concern is whether it in turn would spread after being left behind. Best I could tell from his answer was that theoretically it could although there is no human data to support that theory. There is, however, animal data, which is bad news if you're a mouse with cancer.
Once again, I find myself in the position of having highly skilled and regarded KC doctors recommending an aggressive treatment option while the doctor from the highly respected and prestigious institution is not there yet. Sort of like the decision early on to try chemo as recommended by M.D. Anderson when the doctors in KC were recommending taking a pass on chemo and going straight to the chemoembolizations - the treatment that we tried second with great success. Bottom line for Dr. Ajani is that he simply doesn't think that the risks attendant with a major operation like what we're talking about outweigh the potential benefits.
On the bright side, I did in essence get what I want from this visit, i.e., a surgical consultation with an M.D. Anderson surgeon. Getting a second opinion from another surgeon only makes sense and it was something I was hoping to do all at one time on the 1st. I was told that was not an option and now have scheduled a CT exam with a special look at the liver (December 12) followed by a consultation with a surgeon on December 15. Then, of course, close the loop with another visit with Dr. Ajani.
All these extra visits to Houston, besides making me very popular with Continental Airlines, have thrown the schedule for surgery and recuperation for a loop. Not totally unexpected since I advised Dr. Helling here in KC when I scheduled the surgery in the first place that I'd be going to Houston for a consultation. My hope that the consultation would fall into place in time to keep the 17th as the date for surgery simply didn't pan out.
Now, time for another gut-wrenching (or should I say gut-opening) decision. I feel good about gathering the information, it's just sorting it all out that sucks. Leaving tomorrow for Milwaukee and won't be back till Friday afternoon after my CT scan in Houston. Sorry, Michelle. Back to Houston on Monday the 15th for the meeting with the surgeon and then back again shortly thereafter to meet with Dr. Ajani to see if he has become convinced that surgery for me is a good idea.
In the meantime, will try and decide when the best time to go back in to discuss all this with Dr. Belt. would be. A busy time of year, as you all know, complicated even further by our office move the weekend of the 12th. We did find time over Thanksgiving weekend to get a Christmas tree up and decorated, which many of you will see in this year's Christmas card that once again features Max and the amazing Edward.
That's it for now, time for some sleep in preparation for another busy week. Thanks for checking in and for your continued support, love, and prayers that this time will hopefully bring some clarity to this situation. See you at the airport!
Love,
Mark
Thursday, December 18, 2003 8:17 PM CST
It would indeed be an understatement to say that the last 12 days have been a whirlwind. Since the last update, I've been to Milwaukee once, Houston twice, had my office moved from downtown to Crown Center, entertained two different houseguests, attended Max and Ed's Christmas programs, and experienced two deaths among the SHB family. Let me begin with Houston.
First came the CT scan on the 12th. In preparation for my surgical consult on the 15th with Dr. Abdala, I had a CT scan with special emphasis on the liver and some blood work. This trip to Houston followed meetings and a dinner in Milwaukee the 9th through the 11th, passing through KC for four hours and then flying on to Houston the evening of the 11th. I was in KC just long enough to pack a few last minute boxes and find out that my friend and secretary (Kari Grace) lost her mother (Frankie Sullivan) to the cancer she had been battling for several years. She's doing amazingly well and our thoughts and prayers are with her and her family, especially her dad BJ.
On the lighter side, while I've had several CT scans over the past year, this my first at M.D. Anderson. To say the least, the way they move patients through the various clinics is quite impressive. Efficient, fast, and still time for a little compassion. For instance, there was the small matter of informing me of the M.D. Anderson way of doing an abdominal/pelvic CT exam. Unlike most facilities, I was told, M.D. Anderson prefers to be thorough, which in this case means a barium enema just to make sure they get a good look at the . . . well, let's just say the bottom part of the region scanned. Quite an eye-opener for 7:00 a.m. and not something easily forgotten. Besides the physical aspects, the details of which I shall spare you, the part I will remember most is the kind lady tagged with the job of getting things in place and the calm and gentle manner in which she said "now just relax Mr. Dover." Yikes!
After the scan, it was back to KC for a weekend with a friend (Rick Garza) that was flying in from Seattle and arriving just a couple of hours after I touched down from Houston. We ate our way through KC in 48 hours including stops at Strouds, Wyandot BBQ, JJ's on the Plaza, Arrowhead Stadium, and Arthur Bryants. We both flew out Sunday night a few pounds heavier and me hoping that Monday's blood work would not include a cholesterol check.
And then came the meeting with Dr. Abdala, the surgical oncologist that Dr. Ajani referred me to. After the last somewhat disheartening meeting with Dr. Ajani back on the 1st, I was not quite sure what to expect. I came a little better prepared, however, in that I brought with me an objective observer/cross-examiner, Steve Selsberg, my friend and partner from our Houston office. Let me cut right to the chase here, we were both very impressed with Dr. Abdala. A very articulate, energetic, younger surgeon that began by letting me know that he had been looking at my scans for the last couple of day, which means he worked over the weekend while I gorged myself. My kind of doctor.
Substantively, he is very concerned about trying to go after everything in one fell swoop. In fact, one of the things that sticks in my mind is his assertion that by doing a double organ operation as we discussed doing with Dr. Helling in KC, increases the risk of post-operative complications 4 to 10 times. Rather, he postulated doing a couple of surgeries. For instance, go after the pancreas and do some "clean-up" work on the left side of my liver (the good side) and then going back a couple of months later before cutting out the bulk of the diseased part of my liver. He described their philosophy as being first not to do anything to hurt me (sounds good so far) and then only do surgery if it will in fact do some real good and help me live longer. In fact, his goal is to develop a plan that goes after all the cancer, which also sounds good.
To get to our next decision point, he is going to orchestrate a face-to-face meeting with the other liver surgeons, the "endocrine guys" (surgeons that work on the pancreas), and the oncologists to discuss options. He even mentioned that he was meeting with the liver "transplant guys" on Tuesday and was going to discuss my case with them too. All in all, I came away from this consultation with the feeling that I would eventually receive a very thoughtful, well-informed opinion as to what my options might be. The very reason one goes to a place like Anderson.
Next, after he completes his internal consultations, Dr. Abdala is going to give me a call. We may set another appointment or he may lay out options on the phone. Then it will be time to make a decision. And I have to say sports fans that after Monday's experience I'm leaning heavily toward having surgery done (assuming they conclude surgery is an option) in Houston at the place where the surgeons specialize in operating on diseased organs.
More on the medical front after I hear from Dr. Abdala. As for other matters, Michelle informs me that this update is also supposed to be our Christmas card update. If you've gotten a card, you can plainly see that Ed and Max are as handsome as ever. Both are enjoying school at TLC, especially Ed who gets to go swimming every Wednesday with Ms. Heather (the apple of his eye). Max still misses some of his old pals from Oak Hill, but is doing a great job at TLC even though they make him take polite bites of oatmeal when it is served for breakfast.
Michelle is still on the TLC Board, which is one of her few adult activities. A talent for and keen interest in fund raising (you've been warned), but not too busy to also help out on field trips and the Ground Hog run, TLC's major fund raising event of the year. Most of her time spent running a household with two high maintenance challenges -- Ed and myself. A Herculean effort without which things would simply fall apart around here.
Our heartfelt thanks go out to so many of you that have helped out in so many ways from rides to chemo to a kind word or all-important prayer. A special thanks to my friends at SHB that have allowed me to get through this past year without having to worry about things falling apart at work. Everyone from Kari who helped me through some rather miserable days after treatment to the friendship and moral support of Marty, Sam, John M., Bill K., Bill A., David, David T., Pat, Madeleine, Gary L., John S., Laura, Rob, Tene, the Pams, Debbie, Tetta, Diane, Stacey, Bill, Shirley, Adam, Gayanne, Lori, Jim, Lisa, Jeff, Walt, Nicola, Ed, Ken, Gene, Bob, John F., Dee, Bruce, Brian, (I think this is the point the orchestra starts playing so loud it drowns me out as I continue to have names pop into my head that need to be spoken). Not sure why I even started down that road, but too many keystrokes to waste. I trust this will give anyone else reading this a good feel for why SHB is such a special place.
Grandma Mary has been in KC since Tuesday. Originally part of the plan for my surgery and an effort to provide Michelle the support she'll need if and when that occurs. With no surgery, simply a nice chance for the boys to see their Grandma and open some early Christmas presents before she heads back home tomorrow. And I must say, Max was very impressive tonight in that he may be the only 4 year old that hands out gifts to the adults before opening his own and actually waits to see what they got! And as per his usual custom, each present must be played with before moving on to the next.
And finally, another sad note. SHB lost one of its own this week, Pam Patzwald. Pam had been with the firm long before I darkened its doorstep and for the last four years we worked in close proximity to each other on the 23rd floor of One KC Place. She was an inspiration to me in the way she conducted her own battle with cancer. Brave, dignified, and almost always positive. Never too busy to listen to where I was coming from and always willing to offer helpful advice and encouragement. It meant so very much coming from her and I will truly miss her. Rest in peace, Pam, the end of this journey begins your next.
Two hours in to this session and time to look it over for some editing. Dessert is called for as is a cold beverage. Not sure I'll have anything to add before Christmas and if I don't, Merry Christmas and Happy Holidays. Thanks for checking in.
Love,
Mark
Saturday, January 3, 2004 10:20 PM CST
Surgery? What surgery? After waiting by the phone on Christmas Eve expecting a call from Dr. Abdala, I finally talked to him on Monday the 29th. Although he is still as enthusiastic as ever, it appears that after consulting with the other surgeons, transplant guys, etc., a consensus is developing at M.D. Anderson that I'm not a good candidate for surgery.
A bit of a surprise based on our last conversation, but he assured me he is "not giving up on me." Well, neither am I. It seems that the extent of the disease in my liver makes it impossible for them to perform a procedure that would get it all. They simply don't have anything that would lead them to believe that surgery that leaves cancer behind is going to make a difference in the long run. He does, however, have one more doctor to consult with next week. That consultation may lead to some other treatment option, but is not likely to change the conventional wisdom that for me surgery is not the way to go right now.
He has not, however, ruled out surgery to go after the primary tumor in the pancreas, leave the liver alone, and then pursue treatment options with the hope that I might qualify for a transplant somewhere down the road. Transplantation is not an option now mainly because I'm not "sick" (my liver is still functioning) and the primary tumor is intact. Removing the primary tumor now while I'm relatively healthy and likely to recover well could put us ahead of the game later on. Bottom line here is that I'll be hearing from him again next week after he finishes up the last consultation.
That, of course, brings us back to Kansas City. As you may recall, the doctors here were ready to go the surgery route in late November. With the additional info from M.D. Anderson, I'm going to need to go back to Dr. Belt, my oncologist, and Dr. Helling, the surgeon we consulted with here, and discuss things with them again. They both know I've been going to Anderson all along and it will be interesting to see how they react to the difference of opinion. And that, my friends, is the rub. Once again I'm faced with the likelihood that my wonderful, trusted KC doctors have a different plan than the doctors from the Center of Excellence.
This difference is a bit more significant than the initial split over whether to try chemo or not. The risks are much higher and you don't get any do-overs when you start removing organs. That said, still not sure why I'm not better off with new liver after it grows back if they were to do a partial resection. Best I can tell, the answer is that there is simply no data to support the idea that I'd be better off if they have to leave behind a part of the liver with cancer in it. I had really hoped to be through the decision making process by now given that since my last chemoembolization in September, I've received zero treatment. Apparently, the wheels of justice aren't the only ones that turn slowly.
A blissfully quiet holiday season due, in part, to the lack of planning based on our original thinking that had me going in for surgery on the 17th and in the hospital through Christmas. Took the opportunity to spend time around the house and in the neighbors basement playing on the new pool table. Practice that came in handy when I went to lunch on the 30th with one of my retired partners who had obviously not played for quite some time and who was consequently sent home humbled. Also managed to work in the Chiefs/Bears game, Max's first ever and my first KC Comets game (indoor soccer) in over 15 years, and a trip to Geary's Backyard Wonderland with Max one afternoon. All in all, a fine holiday season.
Back to work next week including a trip to the Capitol City, Washington D.C. Everyone is back in school and we start the new year thankful for all of our blessings, but mostly for the kids. My only resolution was to keep fighting and our toast was simply "bring it on." I don't know why, but for some reason I found myself inspired by the stories about Carolina Panthers coach Sam Mills and his ongoing battle with cancer that was discussed during the Panthers/Cowboys game tonight. Perhaps it was the impression I got that he was simply doing the best he could to fight his cancer while continuing to live his life and do what it is that makes him happy.
Finally, there was one surgery in the family. Max's friend since he was one, "pup-up," has been loved and laundered so many times that one morning after a night of keeping Max company, one of his legs fell off. This was a bit upsetting for Max and required emergency surgery by Dr. Mom. I'm happy to report that the operation was a success and the patient is doing quite well. Perhaps next year's Christmas card picture will have pup-up in it as well.
Once again I've managed to stay up too late. I did, however, take a break long enough to enjoy another piece of pumpkin pie (yes, the weight lost during the last treatment regimen is coming back, with a vengeance) and a cold beverage. Will update again after hearing back from M.D. Anderson and starting the process to talk again with the KC doctors. Until then, here's to a Happy and Healthy New Year. Thanks for checking in.
Love,
Mark
Monday, January 19, 2004 12:03 AM CST
I've always wanted to write a truly short entry, so here goes. I had my second conversation with the surgeon from M.D. Anderson (Eddie Abdalla) on Monday the 5th of January. As expected, they netted out at doing nothing in the short term, but want me back in Houston in a couple of months for another scan and reassessment (no dates yet). Basically, they see no benefit to doing the surgery, only risk.
That said, he did say the tumor in the pancreas was occluding the splenic vein, which will eventually cause localized hypertension and internal bleeding. That, according to Dr. Abdalla, is a good reason to then do surgery. The surgery would remove the primary tumor, which is in the pancreas, as well as the spleen. This, he hopes, would then get me closer to being a transplant candidate. I still wouldn't qualify even after the surgery since my liver is still functioning. Bottom line here is that I have to wait until I get really sick to be considered for a transplant.
The interesting part of this info gathering process happens tomorrow when we meet with Dr. Belt, my oncologist in KC. He made the referral to the KC surgeon who was ready to cut away back in December. He and Dr. Abdalla have spoken by phone and I'm supposed to be getting a letter summarizing the Houston point of view relatively soon. Anyway, will update again sometime after tomorrow's meeting with Dr. Belt.
Thanks for checking in and sorry for the delay in getting an update posted. Nothing particularly good to report made it harder to sit down and go over it all again.
Love,
Mark
Wednesday, January 21, 2004 10:57 PM CST
The flurry of activity that was December, has been boiled down to two words -- observation now. That is the number one "treatment" recommendation from M.D. Anderson following Dr. Abdalla's "multidisciplinary conferences (including medical oncologists, radiation oncologists, hepatologists, surgeons, transplant surgeons) . . . " as well has his discussions with Dr. Belt, Dr. Ajani and his colleague Dr. Yao. A hell of a lot of consulting, scanning, and scratching of the head to decide to do nothing other than "observe."
Other treatment recommendations include no prophylactic treatments (i.e. chemo, chemoembolization, etc.), no surgery in the absence of symptoms, and no consideration of transplantation at this time. They also say that "indications for resection of the primary tumor in the presence of unresectable hepatic metastasis are limited to problematic or symptomatic tumors." The old get sick and then talk to me about surgery routine. That said, the primary tumor, which is in the pancreas, is likely to become "problematic or symptomatic" given that it is growing into and blocking the splenic vein. We'll be observing that very closely since it may well present us with the reason to go in and remove the primary tumor, which will theoretically move me closer to becoming a transplant candidate.
Bottom line, literally, is summed up in Dr. Abdalla's letter, the recommendation section of which concludes: "THERE ARE NO DATA that suggest that you would gain definable benefit from debulking of the primary and/or liver with surgery in the absence of symptoms." The all caps is in the original.
The wait and see approach, slightly modified, is also shared by Dr. Belt here in KC. The slight modification is the use of octreotide as a possible therapy. Octreotide is a synthetic hormone with a special affinity for neuroendocrine tumor like mine. While normally it used to treat patients with symptoms (diarrhea, nightsweats, etc.), there is data that shows that in a small percentage of patients (about 30%) tumor growth is slowed, stopped, and even reversed. And since there is no real down-side, except a sore butt from the monthly injection, why not. After double-checking with M.D. Anderson, they're on board with trying octreotide as well.
As for the meeting with Dr. Belt, it went well and he seemed convinced that surgery was not the way to go right now. In fact, he said that for me a curative operation would have to involve removing the whole liver. And since I don't have any spares lying around and am not eligible to even be put on a transplant list, not much choice here. The possibility of a live donor transplant has also come up a time or two, but that is also down the road given that the primary tumor is still hanging around. It may come up again so be careful if you see me sneaking up on you with a scalpel in one hand and a cooler full of ice in the other.
With all that consulting behind me, I decided that I've simply not had enough. I've been given the name of a doctor in St. Louis at Washington University who is supposed to be one of the leading experts in pancreatic cancer, particularly surgical intervention. At this point, why not? That's still in the works and is probably a few weeks, if not months, away. Stay tuned.
In other news, Edward has been sick with a nasty cold that we're now told is that rather serious respiratory ailment RSV. A serious threat primarily to newborns, but since Ed is like a newborn in so many ways, quite an ordeal for the little guy who has a lot of trouble clearing "gunk" out of his throat. He's also been treated to a fever and nausea. Not much sleeping for him or Michelle the last couple of nights and I'm filling in as Max's bus driver to and sometimes from school. School, by the way, is just a few blocks away from Shook, Hardy's new offices, making the trip more fun than anything else.
Max is also becoming a bit of a Gamecube junkie, with a preference for "Tak." I'm not too worried, however, as he is still having just as much fun with an empty cardboard box that some of Ed's equipment arrived in. The equipment, incidentally, is for transferring the soon to be three-year-old Ed into a twin bed that is going to be in Max's room. That's right, Max says he wants Ed to be in the same room and we're going to give it a try later this month. We'll see how it goes.
To wrap up, we're not where I thought we'd be right now, but accept where we are and am happy to be feeling well and feeling like we're still moving forward. The slow growing nature of my cancer is still a factor in my favor and we have to guard against getting ahead of ourselves while at the same time making sure no opportunity is missed. As a wise woman once told me, the race does not belong to the swift, but to those who endure to the end.
As always, thanks for checking in and for your continued love, prayers, sending of good karma, and support. It is greatly needed and appreciated. A happy and healthy New Year to you and yours. No dessert report tonight, but just remembered the HoHo sitting on the front seat of my car, a leftover from this morning's breakfast!
Love,
Mark
Monday, January 26, 2004 10:08 PM CST
In preparation for this entry, I followed my usual routine of reading the last one in the hope of gaining some sort or starting point and as a way to help with continuity. In doing so, I noted the tone could be said to contain a tad bit of sarcasm. I'm past that now, however, and really do feel good about feeling good and moving forward.
In fact, I now have a schedule for returning to M.D. Anderson. Another CT scan is scheduled for March 5th, a Friday, followed by consultations with Dr. Abdalla (surgeon) and Dr. Ajani (oncologist) on Monday the 8th. Will probably cut out the trip back and forth and just stay in Houston for the weekend. I'm also continuing to pursue a consultation with another surgeon in St. Louis, but nothing set yet.
All-in-all, a pretty mundane report. No potty humor, embarrassing moments with a catheter, or keystone cop (doctor) story to tell. Work is great, Ed is feeling better and back in school this week (much to Michelle's delight), while Max and I work at helping Tak save the Pupununu people (this is a GameCube reference that would have been lost on me too up until a few weeks ago) every chance we get. The ice and snow outside don't make much of a story either, given the wintry blast most everyone in the US is enduring.
So, rather than rack my brain for further material, it's back to the M&M bowl, a Newcastle (sorry, Milwaukee), and the Tonight Show. Will continue to update, especially with regard to the consultation at Wash U. that is in the works as well as any other developments. Almost forgot, no octreotide shots yet as I'm waiting for Dr. Belt's office to call with news regarding the age old question of whether insurance will pay for it or whether we go it alone.
As always, thanks for checking in and for your continued love, prayers, and support.
Love,
Mark
Tuesday, February 3, 2004 10:11 PM CST
Finally, some new material. First of all, I'm all set for a consultation with Dr. Drebin in St. Louis. He's a surgical oncologist that specializes in the pancreas. Dr. Drebin comes highly recommended by others in the cancer field and will soon be leaving St. Louis to become the head of surgical oncology at Penn.
My appointment is set for Monday the 9th at 4:00 p.m. Will probably drive this one, but stay overnight in St. Louis. Not expecting anything more than good information and perhaps confirmation that we're on the right course. Still scheduled for a return to Houston in early March. A Friday the 5th CT scan (the M.D. Anderson way, think enema) followed by consultations with Dr. Abdalla (surgeon) and Dr. Ajani (oncologist) on Monday the 8th, which right now means a weekend in Houston.
I'm also going to start a new "treatment" tomorrow! As mentioned previously, Dr. Belt has wanted to try octreotide injections. In fact, he talked about them the very first time I saw him back in December '02 (damn, this has been going on for a while) and always remarked that we'd really want to have insurance coverage given that these were rather expensive shots. I really didn't pay that much attention back then, but had an idea in my head that turns out to be way too low, pretty much by a factor of six! I can't bring myself to actually say the amount, but suffice it to say that as of 12:30 tomorrow I'll qualify as one expensive piece of --- well, let's just say rump roast!
That's right, it involves a shot in the you-know-what. Thankfully, I only need one every 30 days. And in an apparent attempt to pay me back for what could only have been good natured ribbing on my part, more than one of the nurses mentioned that it involves a "really big needle." I got the impression they were drawing straws to see who gets to do the honors.
The number one down-side, in medical terms, is a sore butt. On the positive side, while normally used to treat patients with symptoms commonly associated with neuroendocrine tumors like mine, octreotide sometimes actually stops tumor growth and may cause some shrinkage. Not a common occurrence (30r so), but worth it, particularly since Dr. Belt recommends this one and so far he's been pretty much right about things.
The really big news around here, however, involves Ed. He is fast approaching his third birthday (February 13), which has particular significance over and above the notion that he's having it at all. You see, at age three, children in need of special services like Ed are eligible to enroll in school and begin receiving services from the local school district, Park Hill in this case. His current school, The Children's Therapeutic Learning Center is not part of the district, and therein is the rub.
The backdrop for all this is a complex maze of state and federal law, which makes having a stay at home lawyer in the family a basic necessity. There was developmental testing at the school district office, on-site observation by Park Hill teachers and therapists at TLC, videotaping, and a fifteen page report concluding Ed is indeed in need of the special services contemplated by the law. No big surprise there, but everything comes to a head at the Individualized Education Program ("IEP") meeting, which for Ed took place on January 30th.
The meeting was held to determine an appropriate plan including goal setting and where Ed would be placed for the next year to receive therapy and schooling. We, of course, love TLC and its incredible staff and were hoping that the result would be basically the status quo. I was once again amazed to be sitting in a room of incredibly caring, dedicated, professionals that were all assembled to discuss one thing -- what can we do to make Ed's life as full as possible. Between Park Hill teachers, therapists, and teachers as well as TLC therapists and teachers there twelve of them. I always assumed that if there were twelve people sitting around a table talking about your son they would be called jurors and it would not be a good thing.
This time it was a good thing and the final result after a dramatic one-and-one-half hour build up was for Ed to stay at TLC. As we approach his fourth birthday, we'll do it again, but for now all is well. A special thanks to Ms. Heather, Ms. Jennifer, and Ms. LuAnn from TLC that took the time on a Friday afternoon to participate. Another special thanks to the Park Hill therapists, teachers, and administrators that took the time to get it right and really dig in to design the best possible IEP for Ed. And of course thanks to Angela from FirstSteps for getting us this far. Ed is one happy dude.
In other kid related news, the boys now share a bedroom. The first night (last night) was fine. Max stayed in there with little brother and the feeding pump alarm didn't seem to bother him at all when it activated at 5:30 a.m. We're also going to have the mini-van modified with a chair lift that will put Ed's chair in and out of the back. We'll still have to put him in his seat, but will eliminate the back-breaking work of lifting his kid cart in and out. In case you were wondering, it is a total coincidence that this became a priority shortly after I took a few turns at dropping off and picking Ed up from school.
Finally, would someone please back me up and e-mail Michelle with word that the Super Bowl really did last seven hours and that it was perfectly understandable for me not to arrive back home until 1:30 a.m. That said, I still feel a bit behind on sleep and need to sign off now, but not until another piece of pumpkin pie meets its delicious fate. As always, thanks for checking in and for the continued love, prayers, patience (that's a new one), good karma, and support (especially those mother McDonough chocolate chip cookies that arrive by the dozen).
Love,
Mark
Saturday, February 14, 2004 11:10 PM CST
While it didn't look good for a while, the trip to St. Louis came together and went well. Between making sure my scans had arrived, to getting my car into the shop, to getting away from work, Monday was quite a day. I was especially concerned pulling out of the car rental lot in a Hyundai with the check engine light on, but somehow mustered the courage to press on.
I was running behind, of course, and pushed that little Hyundai to the limit. If memory serves me correctly, it actually topped 80 MPH once (downhill, of course). Anyway, 3.5 hours and a sore backside later, I arrived at Barnes Hospital to see Wash U's Jeffrey Drebin. The hospital was very user friendly and impressive. They offer valet parking, of course, which must be some sort of accreditation standard for highly regarded cancer centers (M.D. Anderson has it too).
In typical teaching hospital fashion, I first met with a med student, practicing up on his history taking technique. He started, bless his heart, with a very adult sounding "so, what brings you here today." Fresh off the road in my hot-rod Hyundai, I resisted the temptation to say something like "a car." It was just hard to take the poor kid serious given that he made Doogie Howser look old, but he was really trying so I played along.
Next came Dr. Drebin, the med student, and another aspiring doctor. We all sat in the basic exam room like big people, talking about cancer. I still kept flashing back, however, to my refereeing days and felt as if I had just walked over to the JV team huddle at a time-out to tell the coach it was time to get his team back on the Court. For his part Coach Drebin, was a very nice man, easy to talk to, and at ease with his profession.
O.K., back to reality. Dr. Drebin is first a surgeon. In that role, he believes like his colleagues at M.D. Anderson, surgery is not a good option at this time, Although our meeting was relatively brief (10-15) minutes, I got the impression that he didn't think it (surgery) would ever be an option. Dr. Drebin is also, however, very up-to-date on cancer treatment of GI cancers like mine and in that role had some additional ideas that might later prove to be good treatment options.
One of those options involves using Octreotide (the stuff I got a shot of in the last episode) to deliver radioactive material directly to my tumors. He is going to track down further information on it and, in fact, called me in the car on Tuesday on my drive back to discuss further. All-in-all, an excellent visit and another contact/brain to pick for ideas relative to getting rid of Leroy and his stubborn gang of n'er do wells.
Right now, I continue to feel fantastic and enjoy every day. Had a wonderful dinner in St Louis at King Louie's on Monday night with friends Sue and Liz and spent the rest of the week trying to make sense of the piles of papers swirling around on top of my desk.
It all pales in comparison, however, to the fun of Friday the 13th and celebrating Ed's 3rd birthday. Just a small neighborhood gathering with the Youngs and Allens over for lasagna. Ed was his usual party animal self. A true blessing, and as I've said before, love incarnate. He also had a birthday party at school at which I'm told there were digital pictures taken. And that reminds me, I really must put something on here by way of pictures besides the now inaccurate pictures of me with no hair, which some of those in the no-hair club find to be a fraudulent misrepresentation.
Everyone else doing just fine. A special thanks to our friend Janice (a wonderful woman we met thanks to ED), for coming over today and watching kids for the afternoon. On Valentine's Day no less! Should be staying close to home this week, particularly Friday when Michelle has an all day TLC Board Meeting and I get to stay home with the kids. Should be a piece of cake, provided there are no plans to leave the house or change out of our pajamas. I feel another Gamecube marathon coming on!
Well that's it for now, HVD and thanks for checking in. All my best to you and your loved ones.
Love,
Mark
Monday, March 1, 2004 11:54 PM CST
February is gone and March promises to bring more of the same, i.e., CT scans, talking to doctors, and an expensive pain in the butt. The next trip to Houston has been pushed back to March 19th for a scan, followed by consultations with Drs. Abdalla and Ajani on Monday the 22nd. Before that, however, back to see Dr. Belt on the 10th for my second octreotide shot.
Still following up on leads provided by Washington University's Dr. Drebin and his band of middle-school-looking med students. He contacted a doctor at the University of Iowa doing research on my kind of cancer in children and was given the name of another doctor that has been involved with similar research in adults. They both happen to have the same last name and I'm imagining a husband/wife team.
I have the cell phone number of the husband, but have yet to place the call. Seems a bit odd to call someone on their cell and introduce yourself as that 40-year-old patient Dr. Drebin called about. You know, the guy with metastatic neuroendocrine carcinoma. Then he says, "oh, that guy, let me pay for my Starbucks, and we can talk." Interestingly enough, in the string of e-mails Dr. Drebin forwarded, there is reference to work being done on adults in Switzerland. Not sure we're at the point of going international, but such is the lot of those with relatively rare cancers.
Perhaps even more unusual is the conversation I had a few weeks ago with my sister. And no, it wasn't even Jolene! It seems LuAnn had a conversation with our friend Mary Pat (a/k/a the HoHo bandit, see guestbook) who has a relative, that works for this company, that is developing a drug that works on slow growing cancers. It is all very positive and exciting, but in the excitement details were omitted and all she had was a name of the drug that went something like "BMX 507." As we discussed further, it began to sound like it was a license plate and that the cure for cancer could be found in the trunk, if you know where to find the parking spot. Seriously, I sent Lu back for more details because one thing I've learned is that you don't want to leave unturned any promising stone.
Meanwhile, Ed couldn't be happier to be continuing with his therapy/education at TLC. Max is not quite as thrilled with the experience, mostly because he has to eat oatmeal once a week. The full court press is on for the Dovers to once again become dog owners (caretakers for the more politically correct) and this spring may be the time to make the move. Plowing ahead at work by continuing to fight the good fight for America's brewing industry! God, I love my job.
And thus ends this installment of "As the Pancreas Turns." Never a dull moment, only the occasional dull person. Looking forward to finding out more in the weeks ahead and, more importantly, opening day of the baseball season. Hopefully, the hope of Spring Training won't fade to "is it football season yet?" until October.
Thanks for checking in and for the continued hope, love, prayers, and support. As has been reported here before, the race does not belong to the swift, but to those who endure to the end! Finally, more pictures will be posted soon, no kidding, just waiting for the pony tail to grow in or perhaps, the mullett.
Love,
Mark
Monday, March 22, 2004 0:32 AM CST
Old habits really do die hard. Here it is, well past midnight and the urge to add a new journal entry has become irresistible. Nothing new on the medical front primarily because I again rescheduled my next trip to M.D. Anderson. Eliminated the Friday scan/Monday consultation scenario and am now scheduled to go back on Wednesday the 28th of April for a scan, chest x-ray, and labs, followed by consultations with the oncologist (Dr. Ajani) on Thursday and the surgeon (Dr. Abdalla) on Friday the 30th.
A combination of work (I know, poor excuse) and wanting a little bit more time to pass since the last scan in December. By then I will have had three shots of octreotide under my belt (literally), which I am currently receiving monthly. And speaking of procrastination, have yet to contact the doctor with the info on another drug treatment that I found out about during my visit to St Louis and Dr. Drebin at Wash U. Has been at the top of the "to-do" list for a couple of weeks now, which usually means the time has come.
Still feeling "normal" and all checked out O.K. on my last visit to Dr. Belt on the 10th. The injection was quite a bit more painful this time, but suspect it has more to do with my inability to help the nurse with her son's ticket for going 93 in a 70 somewhere in Warren County, MO. And speaking of delinquents, yes, Mary Pat, I received the magazine you pilfered and wish to thank you for it. Plain brown wrapper was a nice touch, but the return address sort of blew your cover. Oh well, given your good intentions and in spite of the escalating nature of your indiscretions (there is still the hoho incident), I can almost guarantee probation.
The big news right now is how we are all anxiously awaiting a new family member, Harry. While Emily and Laura's expected arrivals are all well and good, Harry the bassett hound is scheduled to arrive in Parkville this Saturday, the 27th, just in time for Max and Ed's Spring Break. No wild parties this Spring Break, just the hope Harry can hold it and learn to do his business outside!
Spring is actually arriving here in KC, but winter treated us to a round of strep throat that was shared by Max, Ed, and Michelle during most of the week of the 15th. Perfect time, of course, for me to have to go out of town. Everyone back to full strength now and ready to go.
Speaking of traveling, Michelle went to Aunt Sara's wedding in Madison and actually left me alone with both kids from the 11th through the 13th. The bar was set rather low, all I had to do was keep them alive for about 48 hours. Mission accomplished. She almost chickened out a time or two, but now knows that leaving me in charge is at least an option.
Finally, it's once again time for March Madness. The Jayhawk faithful in the family are simply giddy that their team has advanced to the Sweet Sixteen (even without Roy Schottenheimer!). Better yet, brother Dave and I were able to drag Michelle to Kemper to see their first game. Even had tickets for Sunday's romp over Pacific, but Big 10 fan Michelle didn't see the need to go again when so much could be done around the house.
Well, that's about it for now, just remembered that I have yet to schedule the next shot, which I should get taken care of in early April (if you happen to see me Monday, please remind me to call the damn doctor!). Other than that, don't expect there to be much new on the physical front, but need to follow-up with the lead provided by Dr. Drebin. O.K., now it's 1:30 and time for bed. Perhaps one day I'll actually take one the sleeping pills Dr. Belt prescribed. As always, thanks for checking in and for the continued love, prayers, and support.
Love,
Mark
Thursday, April 15, 2004 10:58 PM CDT
Perhaps the longest stretch yet without an entry and have really been missing it. Still delighted, however, that the main reason for the gaps is the lack of any noteworthy development on the cancer front. Still getting the monthly injections that for some reason have gotten more painful each time. There have been only three, and in the grand scheme of things not all that bad in comparison to some of the other procedures (think Foley here, I am).
Another reason this last shot has given me such a sore rump is that the same day I received it, the 12th, I started off on a business trip to London. Nothing like sitting for 6 or 7 hours after an injection that under good conditions is going to be a pain the butt. No fun stories to tell from this trip, pretty much all business aside from some walking around the Buckingham Palace area. Just got back this evening in time to disrupt bedtime for Max and have to deal with Harry The Hound a couple of times.
Before discussing Harry, I do have a confession to make pertaining to the London trip (no Gary, I'm not going to violate the trip rule). First of all, you should have seen the look on Michelle's face when I said I had a confession to make! Seriously, I left KC Monday evening and arrived home tonight, Thursday. I discovered Tuesday morning, however, that I'd forgotten deodorant! Thinking that at some point I'd remember at a time and place sufficient to do something about it, did not give it much more thought. But then came Wednesday, now Thursday and still nothing! Really just a matter of taking on what some (hi Jim) call "old world charm."
And now as for Harry, he has been officially received as part of the Dover household. Like most of us, pretty well housetrained. He also has short little legs, thinks everyone is a potential friend, and as advertised is pretty laid back. Pretty much your prototypical Dover. Very distinct markings for a Basset Hound, pretty much all black with a white chest and underbelly and four white "socks." The white has what look like Dalmation spots, making him look like a perfect combination of our old dogs, Sam and Spot.
In other news, Max is going to have his tonsils out on June 3rd (adenoids too, whatever they are). Time to break out the old Bill Cosby routine on tonsils, a comedy classic and one even Max would enjoy. Ed still hanging tough and word has it that he went on a class field-trip to a petting zoo. For some reason, he just loves those goats! Go Ed!
More travel in store for me, a couple of trips (Milwaukee, DC) and finally the return to Houston on the 28th, 29th, and 30th. Work has been as fun and challenging as ever with attacks on the alcohol industry picking up steam. First of all, don't mess with my beer. Second, I'm feeling great and enjoy the fray. I'm also totally screwed up on time with the quick trip to London this week and have to sign off now. Literally falling asleep at the keyboard. Please pardon the typos as I'm simply going to sign and post this one!
Love,
Mark
Thursday, May 6, 2004 11:55 PM CDT
Good news may well travel fast, but pausing long enough to write it down is not always an option. As some of you already know, the trip to Houston brought good news. It has caused such a rush of emotion for me that I've struggled with what all to say here. Hang on as I've opted to say a lot.
First of all, the trip was smashed in between some other travel and there has not been much time to pause and take a deep breath these last few weeks. So many wonderful/interesting things have happened during that time the thought of writing it all down in some coherent fashion has had me a tad bit intimidated. Since it's the reason for this journal's existence, it only makes sense to start with the health-related news and the Houston trip.
I caught a 6:30 a.m. flight Wednesday morning and as long as everything went according to schedule, I would arrive at the hospital just in time for the lab work, chest x-ray, and CT scan appointments that were scheduled to have me there most of the day. Everything was going like clockwork. Plane was on time, took a shuttle to the hospital, and was headed up to the lab 10 minutes early!
Feeling as good as I've been feeling, I thought nothing of toting my suitbag (feeling so good I ditched the one with wheels) and briefcase (or man bag for you Friends fans out there tonight). Having been there a time or two, I know my way to the lab pretty well and as I approached was going through the check-in procedure in my head. And that's when it hit me.
I walked through the doors into the waiting area where about 50 other patients were gathered. Some were probably just friends or relatives along for company, but most were patients, some not doing particularly well. The reality of being a cancer patient came rushing back and my first reaction was "I'm going to puke." Having not brought along an airsickness bag, however, I fought that off. Next came an almost uncontrollable urge to burst into tears. I kept moving, pulled it together, and concentrated hard on filling out my little sheet of paper that said I was here and ready to be poked on.
Still a bit stunned, I sat down and waited my turn. As I may have described before, the procedure at M.D. Anderson's lab is to call out names in groups of about 8-10 people, line them up like kindergartners getting ready for recess, and march them back to the various little rooms where two or three of us would be dropped off to have a little blood siphoned off. In just a few minutes I was back in patient mode and everything went fine. All in all a pretty amazing operation considering the volume of people they see.
After labs and x-rays, I had about three hours to fill before beginning the CT prep work (drinking barium). That's when I made the mistake of having lunch, which sort of complicated things in that I was not supposed to eat within 3 hours of the test. In the end, all it did was make the day longer by delaying the start of the CT exam prep work. Of course, the most interesting part of the prep work comes not from the barium I drink, but from the barium they pour in from the bottom during the exam!
After the exam, time to check-in to Hotel Selsberg. My friend and now former partner Steve was letting me stay at his house again, even though he was not going to be in town. Rambling around alone that night sort of reminded me of when mom and dad would leave me at home during the summers when they went to Colorado. And just to fully capture that nostalgic feeling, I had a kegger! (Steve, would you please return the kegs and send me a check for the deposit, thanks). O.K., not really, but I did live it up and had Dominoes delivered!
My first meeting was with Dr. Ajani on Thursday morning. He is the oncologist I've seen all along, and as I may have mentioned not the most engaging sort of personality. I actually saw his Physicians assistant first who spilled the beans. The scan looked good and in fact there has been some shrinkage of the liver lesions and she said the primary tumor in the pancreas may have even been slightly reduced (would later find out that the pancreatic tumor was more accurately described as simply stable, but stable is good!). I was thrilled.
Then came the doctor. His normal troupe of students and PA's was down to one this time. Petrified looking woman who was not introduced, did not speak, and was never even acknowledged as far as I could tell. At one point I wanted to say "boo" just to see if she'd jump out of her skin! Resisted the temptation, but found the whole thing odd yet entertaining.
Dr. Ajani agreed that the scans looked good and that for now we should simply keep going with the monthly injections. We then talked a bit future options and specifically the radiolabeled octreotide (same stuff I get injected with now only it has tiny little nuclear warheads attached). He was not particularly impressed with name of the doctor whose cell phone number I have that supposedly has some connection a hospital in Switzerland nor did he recommend going to LSU, which he says does work in this area. At the risk of defaming anyone, let me just say that Dr. Ajani thinks I should go somewhere they know what they are doing. To that end he gave me the name of a doctor in Tampa at the Moffett Cancer Center and strongly suggested I talk to him as well. No personality, but his bluntness was refreshing.
At the end, Ajani said as far as he was concerned I was good for another 4 or 5 months. Given some of his previous less than encouraging remarks, I asked him what he meant and almost smiled when he said that I wouldn't need to come back until then for another check-up.
The next day I had an appointment with Dr. Abdalla, the surgeon. Surgery is not option, but I kept the appointment because I really like him and he is usually much more communicative. This time, however, he and his entourage had little to say probably because he knows he's not likely to ever operate on me. In fact, the last thing he said to me was "now get out of my hospital, you're not sick." Sorry to disappoint! Actually a very nice visit and will probably still see him from time to time.
Well there you have it. Good news indeed. My plan is to now have the CT films and the radiologist's report sent to KC and have both Dr. Belt (oncologist) and Dr. Gordon (radiologist) take a look at them and go over them with me. Just can't hear good news often enough. I'm also planning on forging ahead with research on the radiolabeled octreotide option for future reference.
I've droned on so long now that I can only add one side story. It's one of those "kids say the darndest things" stories and involves Max. I chose this because if any of you have spent much time around the Dovers you've probably had to suffer through some story that starts out "remember when Mark .... " Or "do you remember when we told Mark he was adopted ... " It goes back to being the youngest in the family, which sometimes has you playing the dual role of sibling and pet. I also wanted to share it since Jolene was visiting from Hawaii the day I got back from Houston and was an eyewitness.
Anyway, we were at the dinner table Friday night when Michelle asked Max to say Grace. Not exactly a normal routine procedure and particularly unusual given Jolene's presence (think lightning bolt here). Well we decided to risk it, but Max acted a bit shy. With his mother gently urging him to say Grace, a somewhat bewildered Max did exactly what he was supposed to he said "grace." That's it, one word, grace! A hell of a lot funnier than the Moss Seed Company story! (that's where Mark innocently asks "who would want to grow moss?").
Unfortunately, it's late and the computer is giving me some message that if I don't logoff in a few minutes, it may cause some sort nuclear meltdown. So, that means time to stop, no time to edit, which is fine since I'm tired! But let me just say it again, thank you all for the love, prayers, good karma, and support. It is making a difference, I know it is!
Love,
Mark
Sunday, June 20, 2004 11:42 PM CDT
I can't even begin to say how excited and absolutely thrilled I am to have gotten the word last month that the liver tumors had all gotten smaller and the primary was, at a minimum, stable if not slightly reduced. That was the word from the CT scan of April 28. Then about three weeks later came the handwritten note from Dr. Belt (it was actually legible!) on the bottom of my lab results that said one of the specific markers they look at in patients with pancreatic cancer was "much better." We're on a roll, baby!
I have also just had a visit with Dr. Belt (actually more than a week ago now, but procrastination seems to be a side-effect of my current treatments) to discuss what to do next. Basically, the plan is to stay the course and stick with the monthly injections of octreotide. There will also be fairly regular CT scans that I plan on going to MD Anderson in Houston for since it appears to be the only place in the country that offers a barium enema with every CT of the abdomen, no extra charge! Actually, will use those visits as the opportunity to stay in touch with their doctors and, hopefully, the latest possibilities for a long-term solution (avoiding the "c" word (cure) for now since operating is not currently an option).
By comparison to the treatments of last year, the monthly injection is "a piece of cake" (Max's new favorite phrase of the week). There was, however, the discovery two shots ago that they decided to start using an even larger needle, which is supposed to avoid the problem of the octreotide solidifying in the needle before making its way into my rump. The new protocol might as well call for taking the ink cartridge out of my Papermate Flexigrip pen and jabbing that in there, but as I said, piece of cake compared to some of their other tortures (remember the Russian?).
The net result of all this is that I'm feeling great and going full speed ahead. Part of me wants to make up for all the time I missed at work last year as a result of the chemotherapy and the hospital stays for the chemoembolizations. Not a very realistic option, at least not one that can be accomplished in a year. And not a very idealistic undertaking, considering the reflecting and contemplating that occasions a diagnosis of metastatic cancer. That said, the pull is still strong given that to me it is a means of acknowledging the many caring, wonderful people I have the privilege of calling colleagues, co-workers, and clients.
It also, however, continues to take its toll on the homefront where Michelle battles every day to keep things running smoothly for the boys. They all helped me celebrate Father's Day today by taking Dad to lunch at none other than Applebee's (Max loves the fries). Then it was dinner with Cori at Tomfooleries at Zona Rosa. The work first play later attitude also means my list of personal calls to return continues to grow, which tells me I may be missing the point of having this time of feeling great. As with all things, only time will tell.
My looking and feeling well does have a strange effect on some people. There is, for example, the retired partner who upon hearing the news from my last CT scan remarked "good, we don't have to be nice to him anymore." That one we can chalk up to him simply being a jerk. Then there was the inquiry from one of my most senior partners about whether I'd heard about the couple in Texas who shaved their child's head to raise funds for her cancer treatment (the child was perfectly healthy). When I said I had, there was no follow-up, just a look and something about needing to sign an authorization for the release of medical records. Let's just say he's a jerk too and I'll feel better. Actually, this kind of humor can only come from truly sympathetic people and is much appreciated. Thank God I'm in the position for it even to be said.
As you might imagine, since it's been over a month since my last entry there is a lot of "other news" to report. Max is well on his way to being fully recovered from his tonsillectomy/adenoidectomy ("T&A" in medical lingo). He even played in his first T-ball game yesterday, which was more like a fumble drill in football as he and his teammates all piled on the ball after it left the tee. And preparations are underway for his 5th Birthday, July 6. I went back to London last week for 5 days on business and got a feel for just how serious they take their football (Euro 2004 soccer tournament under way). And off to DC later this morning until Tuesday evening.
I seem to be rambling on at this point, a combination of the hour and lack of practice. For the near term, nothing of critical importance except the shots. I will update, at a minimum, each time I get a shot, but the next big event in my book will be the next CT scan, which will be in October. Thank you from the bottom of my heart for getting me this far with your love, prayers, and support. The fight continues, the intensity level is simply down a notch. Stay tuned for when we need to dial it up!
Love,
Mark
Tuesday, August 31, 2004 9:58 PM CDT
OK, I may have carried this "no news is good news" thing a little too far, but it's true! Since my last update a lot has happened, it just hasn't had much to do with my cancer. Quite frankly, since that entry back in June I've pretty much been relegated to the monthly shot in the rump and some blood work. I won't bore you with the details of bearing it all for the jab, but the results from the last time I had blood work is worth repeating.
One of the screenings they do specific to pancreatic cancer (Pancreatic Polypeptides) is way down. And when I say way down, I mean waaaay down. While the numbers are out of context, it has gone from over 10,000 to 285, which is within the range considered normal. Granted, this is a test that comes with its own disclaimer "For Research Purposes Only," but it really has me excited about the next trip to Houston and the next CT scan.
My next injection is set for this Friday, September 3rd. I'll also be seeing Dr. Belt and am interested in his take on the blood work and what, if anything, we should be doing differently. I've decided to stop asking if it's OK to start exercising since every medical professional I've asked in the last 6 months has said it was fine. I'm still considering the advice and trying to decide whether or not to seek an 18th opinion from somebody else. Don't want to rush into anything.
As for the next trip to Houston, it's set for the week of October 4. The scan is on the 5th while my meeting with the M.D. Anderson oncologist, Dr. Ajani, is set for the 7th. Will hopefully be good news, delivered just in time for my birthday on the 8th. So, if I may be so bold as to ask, please keep the good thoughts, karma, and prayers coming as they've been absolutely essential to getting me this far. And please forgive my delinquency in getting this update posted. Not the first time I've been late or referred to as a delinquent.
The biggest and best happening of the summer, however, was my niece and Goddaughter Michelle's wedding to Aaron somebody (it just barely surpassed Max's 5th birthday party). It was a beautiful wedding and a great reception. Served as a reason for another family reunion and brought all of my brothers and sisters together in KC along with some of their kids and grandkids! Wow, I just realized that four of my six siblings are grandparents. They must be old. Oh well, I still love 'em.
Around here, Max has started 5-day-a-week preschool and Ed is back at TLC four 1/2 days a week. Ed just got a fancy new wheelchair and is ready to roll for this year. Max and I still fight over the Gamecube controls and have even found a few games we can practice our teamwork on. He has also continued to provide some classic moments destined to replace the stupid stories my siblings tell in an effort to embarrass me from time-to-time.
For instance, upon the death of one of his hermit crabs (little Bruce) and the obligatory backyard funeral, I told Max it was time to go back in the house. Apparently not done paying his respects, he motioned me ahead and said "Dad, can I have moment here?" Well, "of course" I said, and he then spent several minutes in quiet reflection (probably just a ruse to avoid going inside, but pretty funny).
Then there was the one at the pet store in KCK. It was an old Mom-and-Pop establishment, sort of like a general store for pet supplies. It was Saturday afternoon and a tad bit crowded. My friend and neighbor Michael Youngs was with us (think witness here) and heard it all. After paying for the supplies and as I was guiding Max through the crowd, the nice lady behind the counter told me that the dog food I had paid for would be brought around from the warehouse. Max, unsure of what he'd heard, blurts out "Dad, did that lady say you have dog breath?" You would have thought it was the funniest thing these people had heard all week. I covered my mouth and made for the door, trying not to breath on anyone.
And on a sad note, our next door neighbors, the Youngs, moved to Canada (this even after I bought a GM car to thank him for switching to Miller Lite) for Michaels job with GM. Michael and Heather were great neighbors and friends to us throughout the worst of last year. You simply could not ask for better people to call neighbors or friends. WE MISS YOU!
Well, that's all for now. Time to get to work, it's early! And again, thanks for all the love, prayers, and support. It has made all the difference and please keep your fingers crossed, hands-folded, heads-bowed, or whatever in anticipation of the October scans.
Love,
Mark
Sunday, October 10, 2004 12:06 AM CDT
More good news, this time from Texas. Yeeeehaaaaw! Last week's scan, my first since April, showed continued reduction of the hepatic (liver) tumors. The radiologist termed the reductions "slight," but as Dr. Ajani (oncologist) noted, we're not losing ground doing what we're doing, we're gaining it! As for the primary tumor in the pancreas, it remained stable, which means, of course, it didn't get bigger! Both very good things.
Beyond the obvious reason of getting a second opinion from a well-respected institution specializing in cancer, part of the reason I like going to M.D. Anderson is the continuity of having my scans done there and their ability to pull them up on a computer in the exam room. Dr. Ajani pulled up pictures from April and compared them to the October scans with me sitting next to him. One particular slide I remember is the one that allowed Dr. Ajani to point out a large area of "healthy liver." In a near human-like display of personality and hepatic humor, Jaffer (I'm using his first name now that he's loosened up a bit) said "with that much healthy liver you could live 200 years." Challenge accepted, pass me another Miller Lite!
We then discussed what next, which for now will be staying the course of monthly Octreotide injections and another scan in six months. More interesting, however, was his comment about new drugs being developed that may be on the market in about a year. Not missing the opportunity to complain about the U.S. health care system and the way drugs are developed, he noted drugs are in the first instance developed for the more common cancers (lung, breast, prostate, and colon) and then work on similar acting drugs begins on the less frequently occurring cancers (like the ones he treats). Regardless of the dynamics of advances of cancer treatment, bottom line for me is the combination of my cancer's slow growing nature and the impact of a drug normally used to treat symptoms, which I don't have, is buying me time that will hopefully allow us to develop a "curative" course of treatment in the very near future.
Yes, I said it (or at least a variation thereof), the "C" word, cure. As you may recall, one reason surgery has not been considered a good option was that the extent of metastasis in the liver meant the surgery would not be curative, so no good reason to do it (still would like to get that thing out of my pancreas, however). That said, Jaffer described surgery as simply being on the shelf for now and something that may come back into play as we continue to improve in the liver, new drugs come along, etc.
Another good reason for continuing my consultations in Houston even though it means another trip out of town, is seeing my friend and former partner Steve Selsberg. Nice to have a place to stay that's a little more like home even though Steve had to leave the day after I arrived leaving me to ramble around in his house on my own for a couple of days. Took the opportunity to wander around and found the Houston version of Richard and Annette Block Cancer Survivors Park in Houston's Museum District and close to the campus of Rice University.
It was my first visit to such a park, anywhere. Simply put, I was not able to call myself a "survivor" knowing my pancreas and liver were both full of cancer. Coming up on two years since my diagnosis, however, I convinced myself it would be fine and that there would not be a bouncer at the door checking IDs for survivors (somewhere there must be a group that issues such credentials). Perhaps if they called them survivor/patient parks I wouldn't have been so hesitant, but for whatever reason as soon as I spotted this one I parked and went right in. A very nice quiet half-hour of solitude spent laughing, crying, thinking, thanking, and praying. And now having been there, I can tell all of you these parks really are for anyone diagnosed with cancer regardless of where you are in the process. Lots of words of encouragement, advice, and hope that I found a true comfort.
It had been relatively easy to forget about my illness given the lack of symptoms to be managed and lack of significant side-effects from my monthly shots other than the immediate shock of the jab (would it be considered whining if I said again how big the needle is?). As the time for the scan approached, forgetting was not an option and instead worry crept back in, worry that if things were quietly going the wrong way, was I going to regret how I'd spent the last year? I think not as long as I remember what I should have known all along, every day is a gift, enjoy it the best way you know how.
So, here we are. Back in KC on the 7th, just in time to celebrate my 43rd birthday on Friday the 8th. Lunch with a gang from work at Rosedale BBQ and dinner at home with Uncle Dave and Aunt MB that night. So much to be thankful for not the least of which is simply having a birthday, period! The various random acts of kindness that I've been the recipient of amaze me every time I think about them. From mother McDonough's chocolate chip cookies magically appearing in my office to the volunteer drivers that took me to chemo appointments to everyone that paused for a moment and put in a good word for me to the Big Guy, there's little wonder I've made it this far. How could I even consider giving up when so many others refused to do so? It has made all the difference and once again there's not much more I can do other than say THANK YOU from the bottom of my heart.
Not much more to add at this point, this has been a long one although I didn't expect it to be so when I started. Next shot and appointment with Dr. Belt in KC is 29 October. Looking forward to see what he has to say about the scan results and expect he'll be quite proud given that the course I'm on now is what he wanted to do from the start. Will save family updates for the next entry, which will also report in on Dr. Belt's reaction. Till then thanks for checking in and for all your continued love, support, and prayers. I am truly blessed and, quite frankly, amazed!
Love,
Mark
Thursday, November 25, 2004 0:55 AM CST
Happy Thanksgiving! I didn't intend to wait until after midnight to start this, but here I am. Fell asleep on the couch, once again, and woke just in time to hear Michelle on her way downstairs to check on me and remind me (again) that I was to have hooked Ed up for his feeding at 8:30! Well, needless to say I was dutifully reminded, took care of the little guy, and then proceeded to feed myself a piece of Michelle's world famous pumpkin pie. I can think of no better way to ring-in Thanksgiving.
That does remind me of some bad news I have to report. Turns out that Max has discovered the joy of pumpkin pie. Consequently, I am now forced to share, damnit! I suppose he thinks the same thing about me and my Gamecube penchant, but we've been able to work that out, at least for the most part, and we'll no doubt do the same with the pie thing.
As for medical news, I'm delighted to be able to say that there is nothing new to report other than a very nice visit with Dr. Belt. We met back on October 29 and he was, as expected, delighted with the results of the last scan, which showed some additional shrinkage of the liver tumors. And like Dr. Ajani at M.D. Anderson, Dr. Belt thinks we're fine simply staying the course for now and continuing the monthly injections of octreotide (a/k/a sandostatin). As a matter of fact, the next shot is scheduled for tomorrow, the 26th of November.
Looking further ahead, there is the promise/hope of new drugs becoming available within a year or so that are designed to launch full, frontal attacks on Leroy and his band of naughty boys, as well as the possibility of surgery, assuming continued success in shrinking things down and no additional metastasis. All of this is very good, very exciting news.
Back in everyday life, Max is enjoying his time at 5-day-a-week preschool and Ed is still the beneficiary of the loving care provided by the Children's Therapuetic Learning Center, which by all accounts is where he'll be staying for another year. Keep your fingers crossed on that one as the school district reevaluates the situation early next year to see if in fact he'll be staying on after his fourth birthday, February 13.
Ed just keeps continuing to amaze, and grow! Our "baby" is still working hard on holding his head up and still loves his time in the pool. As I've said before, he is love incarnate. Still, quite a load, the brunt of which is gracefully carried by Michelle, his mother and advocate. Michelle is also, by the way, becoming quite the speaker and hitting the lecture circuit to advocate for the school (TLC) and speak about issues related to caring for kids with special needs.
We all got out in the snow this morning and enjoyed the remnants of our little surprise snowstorm. We got somewhere around 10 inches here, which is a lot for us anytime of the year and downright unheard of in November. Harry enjoyed it too, even though he had to hop like a UMKC kangaroo to move around the yard since it came up to his chest! It will all soon be gone, however, and then I'll surely get around to giving the lawn that one last mow I was meaning to give it. And no kidding this time, I actually have pictures available on e-mail that will be posted to this site by the end of the weekend!
Let me close now with how I started, giving thanks. It has been exactly two years since my diagnosis, which seems to have flown by in an instant. So much has happened during that time, however, that it also seems to have lasted a lifetime. Perhaps the latter can be explained by the lifetime of kindness I feel like I've received during that time. Thank you all, each and every one of you, for your kind thoughts, words, prayers, good karma, ride to chemo, whatever.
I know now that just the smallest things can make a huge difference in lifting the spirits of someone in need of a little lifting. No need to worry about perfectly phrased, wise words of comfort, just something sincere, like what happened to me recently on the elevator. Someone I work with, not a lot mind you, simply looked at me and said "I've prayed for you, really hard." I was frankly a bit surprised, thanked her, and then found myself standing alone on the elevator feeling pretty darn lucky, humble, and strengthened. And if you're the one needing the help, let people help you, 99.9% of the people out there mean it when they offer to help and everyone is better off when it happens. (Been a while since I tried to get philosophical, hope you don't mind!).
Time for bed. Thanks for checking in, Happy Thanksgiving (what a cool holiday), and good night.
Love,
Mark
Friday, December 31, 2004 0:15 AM CST
Almost time to say good-bye to 2004 and ring in the New Year. What a difference a year can make. 2003 was filled with worry, uncertainty, treatments, and not much progress in the fight with Leroy and Co., which began way back in November 2002. Then there was 2004, filled with feeling good, making progress, and the monthly pain-in-the-a** shot that has things going in the right direction.
By way of recap, the only treatment I've received the last 12 months has been a monthly injection of octreotide (a/k/a sandostatin). Intended to treat symptoms, which I don't have, this drug has been known to stop tumor growth and on occasion actually cause some shrinkage. Nothing else made much sense at the time, so we tried it and based on CT scans in April and October it has caused some significant shrinkage in the liver tumors and kept the pancreatic mass from getting any bigger. And all the while, I've been able to carry on pretending to be a partner in one of the country's best law firms, Shook, Hardy & Bacon. What a deal!
Since my last update on Thanksgiving, I've had another shot and noticed that the nurses just don't seem to be having as much fun as they used to in picking who gets to do the honors. Now it's more like, "I've seen it before, do I really have to do it again?" Before it was like, "Oh yeah, I remember him, I'd be happy to jab that giant needle in his butt." We all must be mellowing with age.
Settling into this routine has been a nice change. What's next is always the question lurking about and the main reason I plan on continuing to visit M.D. Anderson in Houston for my scans and consultation. It pretty much guarantees my ability to revisit everything and reassess the current course at least twice a year (next visit is set for April '05). There is always the threat of something happening in the meantime (appearance of symptoms, further metastasis, etc.) but I just don't see it, especially the way things have gone over the past year. And when things do change, we'll be ready.
As for Christmas, it was wonderful and one of the first in some time that was not complicated by a huge family crisis (e.g. death, decisions about surgery, etc). John, Melissa and Bryson came for a visit from Denver and Dave, Mary Beth, and Lisa joined us for some of Michelle's best home cooking to date on Christmas day. Then, of course, we just had to go to the Chiefs/Raiders game later in the day where we had the chance to catch-up with the busy teenager, Cori. Christmas with family, friends, and football -- it doesn't get any better than this!
I knew it was going to be a special day when I went in to get Ed out of bed around 7:30 and he was just laying there happy as can be, all smiles. I scooped him up, wished him a Merry Christmas and for some reason asked him if he knew it was Christmas and what that was all about. Then, I swear, he turned his head away from me and towards the wall over his bed on which a drawing of Jesus holding a child hangs. From there he looked out the window, gazing upward, smiling, and looking like he was listening to something I couldn't hear. Whether it was Christmas magic or just me being a sap, it was a great way to start the day. The amazing Mr. Ed strikes again.
And by the way, Ed was discovered (sort of) by the Kansas City Star, which ran an article on Ed's school that featured him and his story as told by his mother. The article was in the business section on the 28th. They were supposed to use his picture from his Christmas program as well, but they went with the shot of some other kids on stage that included some overacting camera hog in a red suit. Oh well, still a good story about the school and just puts more pressure on me to put some damn kid pictures on this web-site.
Finally, let me close this year with another round of great big thank-yous. There are so many wonderful people that have helped us get this far that I'd be a fool to try and thank you all. There are well-wishers, people that have added us to their prayer lists, people that have helped in more tangible ways like hospital visits and rides to chemo, and people you know will always just "be there." Thank you all, each and every one of you. And thanks for checking in. Till next year . . . !
Love,
Mark
Saturday, January 29, 2005 3:31 PM CST
Happy Kansas Day from the Show-Me State. This one really is going to be short. Latest development is nothing more than the monthly shot in the butt, which I received on the 24th. Pretty routine now, but I still meet with Dr. Belt every 3rd visit, and met with him this time.
He is still very pleased with the lack of symptoms or other negative developments and was able to add some good news to the mix. Both of the two specialized blood screenings for my type of cancer have fallen to within normal limits! We're talking changes from over 10,000 to 285 for the pancreatic polypeptide and over 4,000 to 5 for the chromogranin A. I still don't really know what they are, other than signs of tumor activity, but having them knocked down to within the "normal" range is a good sign.
One problem, however, has developed. The port I had implanted in my chest for delivery of chemo drugs is not working right in that the nurse was unable to draw blood from it (multi-purpose little device). Probably just a clot somewhere inside of it, so they put in some Drano-for-humans and told me to come back on the 31st. And I'm sure it has nothing to do with the drunken fool who celebrated a Trent Green touchdown pass by pounding on my chest, but you never know.
Should be more of the same for the next couple of months and then it's back to Houston for another peek inside. In the meantime, the whole house is coughing, hacking, puking, and other lovely things as we take turns with colds and stomach bugs. Was not enough to deter Michelle from discharging her duties as a Children's TLC Board Member and spend a big chunk of the weekend underground in the caves for the school's annual Groundhog Run! Anything for her Ed!
If I am to remain true to my word and keep this short it must be time to stop. That can't be done, however, until I congratulate Michelle (my niece and Goddaughter) and her husband, Aaron, on the news that they are expecting a baby in September! Pretty fast work given the August '04 wedding, but as they say there's no time like the present. And Happy Birthday Michelle!
Thanks for checking in and for all the love, support, and prayers. As for you Jacksonville people, enjoy your moment in the sun, just sorry I'm not coming down to watch the Chiefs. Maybe next year.
Love,
Mark
Friday, February 11, 2005 0:34 AM CST
This one is all about Ed. The coughing, sneezing and hacking referenced in my last update turned ugly for Ed. He developed a high fever and difficulty breathing late at night on Sunday, January 30th that had us on the way to the Emergency Room on the morning of the 31st.
We took separate cars and though only minutes apart, by the time I got into the ER Michelle and Ed were already being seen. I was shown back and directed to a room the name of which made me quite uncomfortable, "Major Medical 2." I came in to find 2 doctors, a med student, three nurses, and one very concerned mother busy connecting wires, taking notes, and otherwise tending to a very scared three-year-old who was laboring for every breath. Temperature, 103+.
A few hours of oxygen, breathing treatments, IVs, x-rays, and exams and it was pretty clear Ed was going to be staying the night to be treated for pneumonia. And as it turns out, he stayed three nights, until Thursday afternoon. Progress was slow but steady. For Ed, respiratory problems are particularly difficult to address given his inability to really cough things up and out by himself. That's where the suction machine came in handy to help him clear that gunk out of his nose and mouth, but I've gotten a bit a head of myself.
Ed was upstairs in a room by mid-afternoon. He was on antibiotics even though they weren't sure if the cause was viral, bacterial, or the result of aspirating fluid into his lungs since he's on his back so much and still spits up a lot. He received regular breathing treatments and was monitored very closely given his high rate of respiration, i.e., he was breathing so fast they were worried he'd simply wear himself out struggling for air. They also had to suction out gunk from his nose and mouth on a regular basis and encouraged us to do it ourselves when necessary.
Mom began to set-up camp and sent me for provisions. And then, of course, there was the small matter of picking up and taking care of Max. So I went to get Max and pack mom a bag. Big brother decided he wanted to visit Ed in the hospital and helped me pack the bag. In fact, it was Max who spoke up and said we needed to gather some of Ed's toys to take back to the hospital so he'd feel better about being there. Toys for Ed was not on the list, and I hadn't thought of it, but there was Max, calm, cool, collected, and looking out for his brother. A bright spot to an otherwise dark day.
Mom stayed at the hospital all three nights with just a little time off so we could go out for Mexican food Tuesday night while Uncle Dave stayed with Ed (thanks, Dave). Aunt Mary Beth paid a visit as did the Wongs and others I missed running back and forth to my office that is a couple of blocks from the hospital. Max was a trooper the whole time, including his visit Monday night. And thanks to Brad and Joy Rhodes for picking Max up from school Tuesday and giving him a fun place to play for the evening. He survived my parenting, but wonders why he can't have ice cream for breakfast any more now that mom is home.
Upon the return home, we became the proud renters of yet another piece of medical equipment, a portable suction machine. Ed's pediatrician said it would become our best friend, which made me think he must have a pretty low opinion of our social life. As it turns out, a pretty handy device that we are thankfully not wearing out and, more importantly, has not become anyone's best friend.
Now for some really good news. First off, Ed went back to school at Children's TLC on Monday the 7th. He did fine at school but did even better on TV! That's right, our little Ed has been discovered. Our local NBC affiliate, KSHB TV41, was doing a story on our 32-year-old first term governor's new budget and some of its more questionable cuts. One of those cuts is set to eliminate a program for disabled children called First Steps that Ed just so happened to have been a part of when he was under 3. They called the school, said they were on the way, and wanted to talk to a parent.
It had been a rather nasty day weather-wise and some schools in the area had actually closed. The school administrators immediately grabbed for their unofficial spokesperson extraordinaire, Michelle, and her charming young son, Ed. Dressed more for the possibility of having to shovel snow than be interviewed on TV, Michelle agreed. Ed is always happy to perform for a camera.
And while I missed the story as it ran on the 6 o'clock news Wednesday night the 9th, I'm delighted to report you can view it on the station's website. It was there today on the home page, but I suppose it may move relatively soon. It is called "First Steps Future" and is absolutely wonderful. Mom and Ed were spectacular and the governor looks like a miserly stooge that couldn't wait to become governor so he could take funds away from disabled children. The internet address is www.kshb.com. Take a look.
That's it, all about the amazing Mr. Ed as promised. Thanks for checking in and for all your continued love, support, and prayers, especially those of you that have been praying for Ed these past four years. Oh, that's right, I forgot to mention, on February 13th Ed turns 4! Happy Birthday, son.
Love,
Mark
Sunday, April 10, 2005 4:04 AM CDT
Finally, some news from Houston. And it's good. Visited M.D. Anderson for another CT scan on the 5th and discussed with Dr. Ajani (GI oncologist) on the 7th. While the primary mass in the pancreas remained unchanged or perhaps got a little larger, the liver tumors stayed in their shrunken places.
This was probably the most positive Dr. Ajani has been in the 2+ years I've been seeing him. In discussing the amount of healthy liver tissue, he noted that if we keep the cancer in check, I've got enough liver that is free of disease to last 100 years. According to Ajani, I've got "a very strong liver." Hmmm, wonder how that happened? I was going to say it is after all the only part of my body that exercises regularly, but didn't want to risk dampening his good spirits.
He then had some advice for me. Save money. No, he does not moonlight as a financial advisor. That was his way of starting a discussion of a new drug that he hopes will offer a more curative solution to my problem. You see, a new drug is in the process of being approved for a very rare cancer of the muscle surrounding the stomach. And since that's not the type of cancer I have, you might be wondering (like I was), so what?
Well, the answer lies in the wonderful and weird world of health insurance. You see, once approved, Dr. Ajani and some other really smart doctors think it will do wonders for my type of cancer and that we should try it. I need to save my money since he says insurance will not cover it until they can be shown results. So, he has told me and three or four other patients with cancer similar to mine to start saving money to be his little guinea pigs.
It was during this conversation that I once again realized why it is I still travel down here for scans and consultations. There probably aren't a lot of doctors that know about this drug and, in fact, the only reason he knows about it is because the people developing it have talked to him about it. The current plan for its name is Sutent, but that's not definite yet and given that it really hasn't been officially named, he didn't think there would be much publicly available info on it. Will have to check on that one, Google, here I come!
One change from my previous visits was that my scan was limited to the abdominal area and did not include the pelvis. Once I noticed this the day of the scan, I kept asking everyone from the receptionist to the tech whether I should be getting the pelvic scan since that had always been the custom. Now, of course, the good news is that by eliminating the pelvis, there was no need for a barium enema. And it's not like I was arguing for an enema, but based on the looks I was getting, some of the people I asked about this new protocol seemed to be wondering why in the world I would question the elimination of such a procedure. I persevered, however, given that one of the lessons learned from all this is that you really have to pay attention and ask questions about your care to avoid mistakes or things slipping through the cracks (not a pun). And in this case, not sure what it was since even Ajani wasn't too sure why the scan did not include the pelvis.
This trip also included another reality check. Cruising along without symptoms it's easy to put this cancer thing sort of on the back burner, out of mind. Then comes a trip to Anderson where you see so many people in various stages of the process of dealing with a cancer diagnosis. We all at some point gather at the lab to be lined up and called back in groups of 6 or 7 to have blood drawn. Some are obviously there for the first time, looking healthy on the outside, save the terrified look on their face. Others are obviously not doing so well. Then there was the cute, sweet looking little boy who must have been all of 2, maybe 3 years old, sitting in his stroller quietly letting his mother put his gown on him so he could take his turn in the CT lab. It took just about all I had to keep from crying every time I looked his direction. It may well be cliché` but if you don't have your health . . .
Finally, my apologies for being so delinquent in getting this update entered. Poor old uncle Dave was so worried he called here Saturday night shaming me into getting this update posted. And thanks to the wonderful people in Houston (Deb D., Sydney, Pete, Gary, Tricia, and the host with the most, Steve) that make the trips so much easier. We've come a long and still have a ways to go. Thanks also to everyone for the prayers, kind words, and good karma. It helps!
Up next, my regular shot in the rump on the 22nd and a chance to discuss the latest scan with Dr. Belt. Will be interesting to get his take on the scan as well as the new drug. Maybe he'll even chip in, maybe not.
Thanks for checking in.
Love,
Mark
Thursday, August 18, 2005 1:54 AM CDT
OK, third time's the charm. I'm going to get this thing updated if it takes all night! That's right, I've now lost two entire entries. I must be way out of practice.
Anyway, it went something like this . . . I was surfing the internet when I came across this web site for cancer patients to log their trials and tribulations. I noticed one had my name on it and I thought what an odd coincidence. Then I realized, this is no coincidence, this is my site, too long neglected.
Since it's 2 a.m. and my 3rd try, *&%$&, let me brief. Well you didn't have to sigh that loud! Anyway, on the medical front I continue to get my monthly injections that are hopefully keeping everything in check. I go to find out if in fact things are still in check in early October when I return to M.D. Anderson for a scan and consultation. Hoping to find out more about new drugs that supposed to be out relatively soon. Will just have to keep my fingers crossed on that one.
In other news, Ed's tonsillectomy was by all accounts a success. He might have a different view of the experience itself, but sleeping better now and not throwing up every morning like clockwork. Thanks to grandma for coming to KC to help out and to aunt G, Dave and Mary Beth, the Rhodes, and everyone else who pitched in.
Max starts 5th Grade on the 23rd. Not really, just seems like it's been so long since I've written. In reality, he's going to kindergarten, which is a good thing as he's worn his mother out with his bug hunting expeditions. He'll probably do the same thing to his teacher, especially if she's not as enthusiastic of a bug hunter as mom.
I had a funny story about one of my injections in the butt and how I tell everyone at the clinic that my favorite nurse Martha know my butt better than I do, but too late to type it again. I'm also leaving out all the travel I've been doing and how there's more to come, including a trip over Michelle's birthday on the 21st! Max and I have plans for tonight, but it will be a while before I live that one down.
As a matter of fact, I'm not going to edit this thing as that seems to be what gets it lost. So with that, thank you as always for your continued love, prayers, and support. It has gotten us this far and will be needed to claim ultimate success. Tell you friends I'm back, and the entries I typed at midnight, then at 1 a.m., were really good, trust me, I'm a lawyer!
Love,
Mark
Saturday, October 29, 2005 0:52 AM CDT
Hello again. Shamed into another entry by my friend and partner Tom Duncan who called me today (again) to see how things went in Houston. I must say I am quite embarrassed by my tardiness in updating, which must be a function of my propensity to procrastinate. Either that or my futile desire to have this whole thing have been a giant misunderstanding. Whatever the reason for my recent inability to make myself sit down and write these things, my apologies.
First off, Houston. I had an MRI, as opposed to a CT, on October 4th and met with Dr. Ajani on the 6th. Bottom line here is all is "stable." Pancreatic primary is about the same as is the metastatic disease in my liver. They did see more in the liver, but attributed that to the different technology that is supposed to give a better view of soft tissue (so why didn't we think of that before?). And most importantly, Dr. Ajani assured me there is still plenty of healthy liver tissue in there.
The plan going forward is more of the same, a monthly injection of octreotide, blood tests for evidence of biological activity, and a scan in April of '06. In the meantime, still waiting for the new drug Ajani talked about on my last visit when he advised me to start saving money since insurance is not going to pay for something new and unproven. And speaking of new and unproven, Dr. Belt has now added his two cents worth.
Met with Dr. Belt during my last visit for an injection on the 24th of October. He had just been to a presentation by researchers that think they have discovered a virus that would basically seek out my type of tumor, make it sick and kill it. I love the idea of that since that's exactly what cancer tries to do us. Why not give it a taste of its own medicine. No timeframe on that, but given my current lack of symptoms and the lack of growth or further metastasis of the cancer, we'll just have to wait and see and cheer those drug companies on as they try and find/stumble across the drug that will act as a cure. So quit beating up on those poor old drug companies!
As for Dr. Belt, KC's finest oncologist, he was quite chatty on my last visit. We discussed frivolous lawsuits and other lawyer shortcomings before he decided to get a nurse to give me my injection, draw blood, and flush my port. I said to be sure to send in Martha as she knows my ass better than anyone! He found this quite amusing and proceeded to find Martha to tell her and all the other nurses that she needed to see me given her intimate knowledge of my backside. Then, of course, on the way out I ran into the nurse who had a rather difficult time a while back getting the rather thick solution through the rather large needle before it solidified resulting in having to endure two injections. She was quite offended (not really) by my preference for Martha.
I'm coming up on three years since my diagnosis, which probably explains why my trips to Dr. Belt's office are like old home week. They are truly wonderful people and pretty much the same ones that were there three years ago when this whole thing got started. It's very comforting and reassuring to go somewhere where the people are familiar and genuinely caring. There simply is no way to express the kind of gratitude I feel for having those wonderful people involved in my care.
It really is hard to believe this has been going on as long as it has. I was recounting the story of being diagnosed and having my first consultation with an oncologist. I was in North Kansas City Hospital the day before Thanksgiving 2002. I can't even tell you the doctor's name, only that he said the average time between diagnosis and death for pancreatic cancer patients is six months. I also remember him saying they were going to do some additional testing of the pathology as there was a chance it may be a rare form of pancreatic cancer that is slow growing and not an immediate "death sentence" (Martha's words for a pancreatic cancer diagnosis). And lo and behold, the North KC oncologist called me the Friday after Thanksgiving from his mother's house in Pennsylvania to tell me they thought it was a neuroendocrine cancer, which is as good as it gets in the world of pancreatic cancer.
That, my friends, is the reason I'm here today to write this journal entry. I've had three different people referred to me over the years as a resource for someone recently diagnosed with pancreatic cancer. I know to inquire about the cell type and since 97% of the time pancreatic cancer patients have adenocarcinoma, the outlook is more like what I was told Thanksgiving Eve 2002. To a man, when checking back with the mutual friend that referred them to me, the answer is the same, all have since died. And for some reason that bothers me, a lot.
That said, I very recently for the first time called myself a cancer survivor. It happened as part of a rather odd encounter involving a taxi in Washington, D.C. We were trying to catch a cab when one pulled over with a passenger already in the back. The driver did not speak English very well, but turns out that according to the taxi cab bill of rights they can pick up passengers along the way provided it doesn't take the original passenger more than 5 blocks out of the way. Anyway, as I was leaning through the car window as confused as the man in the back, my LIVESTRONG bracelet must have shown because after telling the driver to go on, the car went just a few yards then stopped. The gentlemen in the back got out and said you can have it and asked if my bracelet was in fact a LIVESTRONG bracelet. He then said he was with Armstrong's foundation and I just blurted it out, "I'm a survivor, thanks." And that was it. I think I've come a long way from feeling out of place in Houston's Block Cancer Survivor Park (still never been to KC's).
In closing, thanks again to the Houston gang (Steve, the host of all hosts, Deborah and Gary for carting me around) for making my trips to M.D. Anderson so easy. And thanks to everyone out there that has said a prayer, sent good karma, or otherwise had a kind word or thought as it makes all the difference. More on the family next time. I must mention, however, I will be left unsupervised with both boys while Michelle makes a quick trip to San Francisco for some much needed R&R over the weekend of November 11th. Wish me luck. Better still, wish Max and Ed luck.
Love,
Mark
Monday, January 16, 2006 1:25 AM CST
You know you're getting older when the only stations that play your favorite songs advertise that they only play "classic" rock and roll. And for those of you a few years younger, don't laugh, if your music is played during the "retro" show, it's just as bad. That said, I don't know what it means when your Caringbridge author sign-in requires you to go to "Caringbridge classic." Actually, I know one way to look at it, I've hung around long enough post-diagnosis to be a Caringbridge old-timer, and that's a good thing.
And hang around is what I think I'll do. As per my last visit to Houston and the University of Texas's M.D. Anderson Cancer Center (the real reason I'm a UT fan, not just Vince Young), plenty of healthy liver and all is stable. Just waiting and waiting for new, curative drugs to come on line and see if we can't just get rid of the cancer altogether. In the meantime, however, much to report including another entertaining visit to Dr. Belt's in KC for the monthly injection.
As you may have noticed in earlier entries, I often get my monthly shot in the rear from the same nurse, Martha. An absolutely delightful person and talented nurse. After more than three years of patronizing Dr. Belt's clinic, we've all gotten a bit chummy and enjoy a bit of joking around. Though I think it was an act, Martha may have been a little embarrassed during my October '04 visit when during my meeting with Dr. Belt before my shot I made sure to ask for Martha because she knows my rear so well I'm not comfortable sharing it with just anyone. He thought it quite funny and proceeded to tell everyone else in the office about Martha's intimate knowledge of my back-side.
She may have gotten her revenge in December. Upon that visit, Martha came into the exam room with a friend. A new nurse that was going to be learning the ropes. I thought fine, until I realized she was going to let the rookie do the sticking. Still not sure if it was an act, but the new nurse had supposedly never given anyone an octreotide injection. It's a rather delicate matter involving mixing in the exam room, switching needles around, and finally pushing one the size of ball-point pen into the patient's butt and injecting the solution before it solidifies in the needle!
Martha was actually making faces at me over the very nervous new person's shoulder. I played along thinking she'll step in at the moment of truth and do the honors, which requires a steady and fast hand. Well she didn't. And as we all know, fast is a relative term. The new nurse was not very fast. Methodical would be a better word. So there I was, trousers down, wondering if any of the medicine actually made it into my body. Frankly, I didn't care, figured I'd get some next month as I did not want to give slow-poke another chance. I saw Martha in the hall afterward and she could hardly contain her glee. Back again on the 18th of January, stay tuned.
In other news, we survived the holidays, barely. Thanksgiving was terrific with grandma coming in from China and Michelle's sister, Beth, and her family, Brian, Noah, and Adam joining us for a fabulous home-cooked feast.
Max was very excited about Christmas and even had a solo part in the school Christmas program. (picture on the website soon). At 6 and 1/2, this was a prime Christmas for Max. But true to his empathetic self, he was very concerned on Christmas morning about one small Santa goof. At 5 a.m., the best we could do to contain him was to simply have him go down and check to see if Santa had been to our house. He returned happy to report that the big guy had been there but said "mommy, you're going to be very sad. You're stocking is the only one still hanging and there's nothing in it!" The kick to my shin made me think this was somehow my fault, but we reassured Max that mommy had gotten her stuff out earlier and simply eaten it all, so no need to worry.
We drove to Mazomanie, Wisconsin a few days after Christmas and stayed there until after the 1st. Great Grandma hosted us and we had a wonderful time, especially Max who spent as much time as he could picking up rocks in the big hole in Great Grandma's backyard that by now is the foundation of her new home that is under construction. We brought home lots of Wisconsin rocks that Max thought would be wonderful items to sell to passers-by, sort of like lemonade. And damned if he wasn't right. He made a little over 10 bucks selling rocks sitting at a table on the corner.
As for Ed, just had a little bout with a stomach bug, not pretty. I am a little concerned, however, with his apparent tendency to be irresponsible with money. You see, a few weeks ago a collections agency called for Ed Dover concerning some medical supplies he purchased but failed to pay for to the tune of $86. Though I did not get the pleasure of hearing it, the conversation with Ed's mom about the potential for legal action did not go so well for the caller. Something about you go ahead and file your lawsuit, we'll be happy to bring Ed to the Courthouse. Wow. It's been a while since I had one worth writing about, but the wrestling with the insurance company really is at times a full-time undertaking for Michelle.
And finally, as for Michelle, her turn in the medical spotlight is this week. On the 18th of January she'll be undergoing a full hysterectomy. In and out of the hospital in just a day or so these days, but recovery will take a while and mean no lifting heavy things like, say, the 55 pound Edward! Will present quite the challenge to her "patience" and my helping out "skills." We think it's time to start thinking elevator, or move to a one-level house. We'll see, but for now it will be no heavy lifting for Michelle for several weeks.
That's it. Happy to have finally gotten this done and thanks for checking in and for all your love, prayers, good karma, and support. Back to Houston in April for more scans, but surely I'll have to update this before then to let you know how Michelle fares and whether Martha gives me the next jab or she makes me do it myself!
Love,
Mark
Monday, April 10, 2006 11:01 PM CDT
Back from Houston after another MRI and consultation with Dr. Personality (a/k/a Ajani). This time, however, the news was not what I've grown accustomed too, i.e., all stable, keep getting your monthly shot in the butt. No, this time it was more like "Our recent MRI shows further increase in liver mets, splenic mets and increase in pancreatic mass." Those are the words in Ajani's note to Dr. Belt that he scrawled out for me while I waited in the waiting room after my Thursday morning (the 6th) consultation.
I'd like to say I was stunned, but quite frankly I knew at some point the news would be on the negative side of the ledger. No question this qualifies as negative, but all is not lost. Not by a longshot.
Dr. Ajani's note goes on to say that we should discontinue the shots and "try to get him on SUTENT." This is the drug I've been writing about and waiting for what seems like an entire year. It was just approved in January of this year for two other types of cancer, but all along Ajani has believed it was a good fit for me and would offer some hope of stopping any further progression.
As luck would have it, I am scheduled to see Dr. Belt in KC on Wednesday the 12th. Will see what he thinks of the Ajani plan. We'll also need to discuss what is the best way to go about running this baby up the insurance company flagpole, given that the drug is very new and not likely to be on their radar screens as a treatment option. If Ajani writes the prescription, I may have to go down there and take the pill every month. If Belt does it, all the action will be in KC.
I wish I could be a bit more entertaining here, but the news and the need to have to deal with a new plan is rather unsettling. The past two years have been pretty easy, too easy. It was nice to go to Houston, get a scan showing all is stable, then come home and get back to life.
The good news is there is a good option out there and as far as organs go, the spleen is pretty much surplusage. I remember when surgery was being considered a doctor said the spleen would have to come out and when I asked why he said "because it's in the way." Guess that means it's not particularly "vital" now doesn't it.
Anyway, will have more to write about later this week after talking to Dr. Belt. Until then, thanks for checking in and for your continued love, support, and prayers.
Love,
Mark
Sunday, June 11, 2006 10:29 PM CDT
It's been a while, but I'm back. The news from Houston in April was "unsettling," however, things have now settled down once again. I saw Dr. Belt shortly after the visit to Houston and the news of further metastasis. We discussed the situation and like Dr. Ajani in Houston he recommended going with Sutent, a newly approved "next generation" chemo drug.
With doctors' orders in hand, the next trick was to see if we were going to have to fight with the insurance company to go along with the plan. A reasonable fear given past history and Ajani's statement that this just may be the most expensive cancer drug ever developed. Long story short, through the efforts of Belt's office and a company associated with the drug's manufacturer, Pfizer, the pills started arriving late April.
I take a pill a day for 28 days then get a week off. I'm already on the second round and have little by way of side-effects, which is how it's supposed to be with these "new" chemo drugs that are only supposed to be toxic to the tumors. The only effects have been some mild GI disturbances (polite way of saying diarrhea), dry, cracked skin on my hands, decreased appetite, and energy loss.
Related to what I don't know, but right about the same time I went to Houston I started to have some sharp pain in my abdominal area that for a couple of weeks made life pretty uncomfortable. Pain would radiate up to my left shoulder and made me "walk like an old man." To cure my ills, or just shut me up, Dr. Belt's office called in a prescription for Oxycodone. I went to our usual pharmacy, Target, and the pharmacist said she would have to check to see if they had "that many." Well this made me curious so before I wandered off to shop and wait, I asked how many pills did they order? She said 100, which really bummed me out as I thought they must think I'm going to have this pain for quite a while.
Best guess as to what caused the pain was inflammation around the liver. A few miserable weeks and a few dozen pain killers later and the pain just sort of went away. After getting past that and getting used to the new pills (that for some reason I have the damnedest time remembering to take) things have settled down. I now see doctor Belt once a month at the end of each 28 day period of pill popping. Next trip to Houston is set for August, four months since the last visit rather than the usual six. And assuming all stays as is, should be back to the usual grind of being fat, dumb, and happy.
As for the fat part, between the period of time I felt rather crappy and the appetite decrease that I think the pills cause, I've dropped some weight. It really looks worse than it is since most of the time I'm wearing clothes that were purchased to fit a much larger version of myself. I've actually had people that have not seen me recently not recognize me. I try to explain by just saying I need to get some clothes that fit, I'm still really overweight, you should see me naked! Not much explaining, or conversation for that matter, after that comment sinks in.
Anyway, here's to the next round of chemical warfare being waged inside my body against Leroy and his fellow bastards taking up space inside my abdominal cavity doing me absolutely no good. As for doing good, I have heard one interesting theory for why my spleen may not be such a superfluous organ after all. Maybe its job was to do exactly what it did, capture the escaping Leroys and keep them from going some place really important. As the theory goes, it makes the spleen your basic "bastard catcher." I like that theory.
In other news, summer is well underway in KC and it has been an eventful past two months. Max has made it through kindergarten (we're so proud) and will be going on to first grade! He's playing "baseball" (I have to use quotes since a machine actually throws the ball rather than a kid/pitcher) and enjoying the pool. He's already brown as a nut. Ed is still Ed. Happy as can be, love incarnate. He starts summer school tomorrow, which will be his last term at Children's TLC/Easter Seals at 31st and Main.
Cori graduated from St. Teresa and is all set to attend Mizzou in the fall (University of Missouri - Columbia). In spite of the Missouri thing, Uncle Dave was kind enough to attend graduation ceremonies with me though I swear he had on blue undershirt with a giant jayhawk on it. She's done a terrific job so far and we all believe/expect that college will be no different, provided she does not apply the Mark Dover study plan to her first couple of years of undergrad!
And some sad news as well. My Uncle Lawrence Dover passed away in May. He was my Dad's last surviving sibling, closing the chapter on our version of the Greatest Generation. And adding to the sadness, our neighbor William Coffey passed away just last week. He lived with his wife and mother-in-law just one house down and have been incredibly good neighbors. Max calls the women "grandma Judy" and "grandma MaeDean" and William by his nickname, YaYa. Adding to this drama was Michelle having to run across the yard after a panicked call for help from the mother-in-law, MaeDean, (she's 85) to try and revive him before paramedics arrived. It was too late, but quite the traumatic experience for Michelle.
There are several more stories to tell given the amount of time I've allowed to pass since last writing, but for the sake of brevity, if it's not already forsaken, they'll have to be passed along at a later date, perhaps in person. So with that my friends, let me thank you for checking in and for all your continued love, support, prayers, and good karma. The battle may well be heating up, but I'm hoping the opposite is true and we will return to the land of stable.
Love,
Mark
Sunday, September 3, 2006 9:32 AM CDT
In the last episode of "As the Tumor Turns," I noted that things were heating up and the hope was that things would return to the land of stable. No such luck. Seems as if the Sutent was only partially successful in knocking some of the tumors back a bit. And unfortunately, the place where it failed is the place it was needed most, the liver. The bottom line, according to the doctors at M.D. Anderson, is "disease progression."
The good news is that the primary tumor in the pancreas did respond and got smaller. Additionally, there was no progression to other organs noted other than what we already knew about (pancreas, liver, and spleen). Not much consolation, however, given that the liver has always been the main concern since you only have one and it's kind of important!
So, what now? Dr. Ajani in Houston gave it some thought and recommends that I stop taking Sutent "today" (August 31 when I met with him) and that we once again embolize the liver. In fact, he recommends doing it four times in the next six months. As for what that means, if you've been following this saga for long you may already know since I had it done three times in 2003.
For the uninitiated of just plain forgetful, it's basically a procedure like angioplasty where they puncture an artery in the leg and insert a tool attached to a flexible wire. And instead of going to the heart, they go to the liver and drop off some chemo drugs and, more importantly, intentionally cut off the blood supply to a portion of the liver depriving the tumors (and the liver) of blood with the hope that tumors will die off. The liver bounces back, but since it essentially shuts that portion down they can only do small parts at a time, hence the four embolizations over six months.
The down-side (there's always a down-side) is that this procedure really ticks off your liver. Its displeasure is expressed in the form of pain. Seems as if the liver has its own supply of nerves and is not afraid to use them if you go poking around in there. Managing that pain is the reason that hospitalization for a few days is necessary each time and the reason that you wake up back in your room with a morphine pump in your hand to self-administer as necessary (just not too often as it only works every eight minutes). And while it sounds like fun, it really isn't. One other potential down-side is liver failure, let's not even go there.
Ignoring Dr. Ajani's advice, I went a head and took another Sutent deciding that I'd wait until Dr. Belt in KC weighs in before deciding what to do. Called his office from the airport in Houston and was able to get in Friday morning first thing. He reviewed the paperwork from Anderson and agreed, back to the embolizations.
On a side note, it was a momentous day in Dr. Belt's office, Martha's last day. Martha is the nurse that had been designated as my personal pain-in-the-butt back in the day when my only treatment was a monthly injection of octreotide. Ever since I stopped baring it she's apparently been unable to bear the loss and in order to cope put in for and received a transfer to the Johnson County office.
On the up-side, the hospital stays did provide some of the most entertaining moments of this whole ordeal. Perhaps there will be more to come. On the other hand, I cannot yet imagine myself walking back into the hospital of my own free will for these things. I know I have to and that I will, but just can't visualize it yet.
Well that's about it for this cancer stuff. A setback of sorts, but not insurmountable. The emoblizations were effective before and I'll probably go back on Sutent when it's over. It certainly means more to report and a return to these updates on a more regular basis. Will most likely start in early October as I'm supposed to be off the Sutent for about 30 days before doing them as the Sutent would promote bleeding.
In other news, Ed is now a full-time kindergartner and even gets to ride the bus every day. Max is very jealous. Max is also now a 1st Grader and enjoys recess very much. The rest of the day he could take or leave. And Cori, she is now an official MU Tiger.
Michelle is on the School Board at Max's school (Oak Hill Day School) and I'm now on the Board at Ed's old school, Children's TLC Easter Seals. We're both still trying to figure out school board politics, but both find the experience interesting and worthwhile.
We're also having a lift installed in the garage that will get Ed in and out of the house in his wheelchair, saving on Michelle's back somewhat. Still don't know what we'll do about getting him to the second floor. Looked into an elevator, but not a very good solution. May be time to look into moving as he's not getting any smaller.
Well that's about it, looking forward to the Chiefs season and anything else along the lines of entertainment Thanks for checking in and for all the good thoughts, karma, and prayers sent my way. They're still needed and much appreciated.
Love,
Mark
Friday, September 29, 2006 9:39 AM CDT
Hello out there. Home from the hospital last night Thursday the 28th after getting admitted on Wednesday the 20th. One heckuva an update on its way as soon as I can manage it. Will feature a new Caringbridge classic comedy line!
Love,
Mark
Friday, December 1, 2006 5:19 PM CST
Hello. Mark has granted me permission to update his Website. I am honored. Mark is at St. Luke's for his third chemoembolization. It was performed by the very competent and very well liked Dr. Yetter on Thursday the 30th. And no, he has not abandoned this site. It has been a busy couple of weeks some of which have not been all that pleasant. He promises a complete update by the end of next week. He keeps most of his promises so please stay tuned
Love
Michelle
Friday, December 15, 2006 9:31 PM CST
I should have looked at Michelle's entry to see what it is I'd promised. Too late. Sorry about that.
Let me begin with where I think we left off, late summer before the first and worst chemoembolization of this latest round of four (three down, one to go). Having just gotten the news that the new drug I had tried earlier in the year had not done as we'd hoped and that there had been some disease progression, it was the recommendation of the M.D. Anderson doctors and doctor Belt here in KC that a round of four chemoembolizations would be the next course of treatment.
As you may recall, this is the procedure where a catheter is inserted into an artery, usually in the leg, and chemo drugs are delivered as well as making an attempt to cut-off blood to the tumors. Collateral damage, however, occurs in the form of blood being cut-off to a portion of the liver, which makes it none too happy. It requires a short hospital stay (typically 2-4 days) for pain management (the liver's revenge). And, yes, I am awake for the procedure but heavily sedated.
The four procedures were supposed to be done over a four to six month period, doing just small portions (quarters) at a time to avoid causing liver failure with the procedure, which would be very bad. We were also planning to wait for 30 days after taking the last Sutent pill because it thins the blood and they did not want to be in there poking around when bleeding is an issue. My body had different plans.
I'm beginning to think Leroy is back with a new posse. Before the 30 days even went by, I began to experience a lot of pain in the abdominal area. So much so that pain killers were not helping and were actually hurting by doing what it is they sometimes do, cause constipation. As a result, I was hospitalized on Wednesday September 20th.
The first couple of miserable days were spent getting ahead of the pain and behind my behind. Then someone floated the idea of "while you're here let's go ahead and do the first embolization." Wanting to move things forward, I agreed. That, however, was not a good move. It meant that this time I would be going in thoroughly worn out, beaten down, and demoralized. The procedures are bad enough when I walk in feeling well, so this had trouble written on it from the start.
The procedure went fine, but it was all downhill from there for a while. First off, because I was admitted somewhat unexpectedly I was not put on the KC Cancer Center's floor of the hospital. This made a huge difference, I'm convinced, as the well-intentioned staff just didn't have the same training and experience. One example is when preparing to go to the procedure I asked the very young nurse about the good 'ol Foley catheter. She said it was not ordered, but I assured her that every time one was necessary. I think she was of the impression that I was some sort of weirdo and just wanted her to do it for fun. She won and I made it to the procedure room with no catheter. They, of course, asked where it was and just did the honors down in the procedure. All I can say about that is OUCH!
After that, recovery was slow and painful. At one point, I became totally water-logged because the saline solution was left on too long (supposed to be turned off when morphine pump no longer necessary). My legs were totally swollen then one resident had the idea of putting those massaging pads on my calves overnight. The result was thighs that looked liked squishy watermelons. Next came the diuretics and the comedy classic I referred to a while ago in an earlier truncated message.
First came the IV version that was administered at 9:00 p.m. From then till midnight, every 15 minutes brought sweet relief. Next morning the doctor stopped by to see how it went and suggested switching to an oral version in preparation of going home. So I took one and he said he'd be back in a few hours to see how it went. As promised, he returned with his research nurse and I was there with my sister LuAnn who had flown in to hang around the hospital and be crabbed at by her little brother.
Anyway, the doctor came in, rather shy fellow who I really like, to see how things had gone. And then he said it. He asked if the diuretic I had taken by mouth had caused me to "urinate orally." The rest of sat there in stunned silence and I thought to myself if that's what it was supposed to do thank God it didn't work!
Anyway, I spent a total of eight days in the hospital for this ordeal and recovery was slow. A lot of pain causing untold amounts of crabbiness (sorry, again, Lu) that I have since had a chance to reflect on. Most of the time when someone is in pain we give them a pass because, after all, they're in pain. In thinking about just lying there, however, I began to think there's more to the story. First, watching everyone else move about when you can't eventually gets to you and you become envious or even resentful. Then, watching others make plans for a good time you won't be participating in is hard in that it reminds you of your predicament and if you're feeling really down in the dumps makes you wonder if you'll ever get to do those things again. Anyway, this all made sense when I first thought about it and very philosophical, not so much now.
As for the next two procedures, they took place in October and November with my last discharge from the hospital coming on December 3rd. And while the procedures have gone well and only required three and four day hospital stays, recovery has been slow. Am still anemic and receiving shots every two weeks to get my body to produce more red blood cells. Procedure number 4 not scheduled yet, but hoping for the first week in January. After that, it will be a month or so wait and then a scan to see how the old liver is doing and what kind of damage we inflicted on Leroy and his nasty little friends.
To summarize the medical front, the past four months (December included) have been the worst or at least it seems that way having been so fortunate the two years before that. At times, I think I'm fighting a losing battle, a mindset that is not natural for me and very unhelpful to everyday life. That's a big part of the reason it's been so hard to sit down here again and write this note. I'm sure good things are just around the corner, at least Christmas is. And if I just remind myself of the good karma, prayers, and good thoughts that have been sent my way this will get better.
Having gone on this long already, I'll make the family report brief. As many of you may know, Michelle has kept the Parkville Post Office busy with her 250 strong Christmas card list. We have a Christmas tree up that Clark Griswold would be proud of, am just hoping I don't get a jelly-of-the-month club membership. Ed is attending and loving Maple Valley State School and Max is still pretty luke warm to the whole school thing. He'll be playing some YMCA basketball this winter and even joined the school chess club (Uncle John is so proud). As for work, I'm there some, but it has been difficult. Thank goodness for the couch in my office, it's been very handy for afternoon naps. And, of course, the Firm has been nothing but supportive making this much easier to deal with. I could not ask for better partners and friends.
That's it for now. Time to proof read and then to bed. Sleeping has not been one of my greater accomplishments of late, really need to work on that. As always, thanks for checking in.
Love,
Mark
Tuesday, March 6, 2007 8:10 AM CST
Hello, this time it is Michelle. I have sat here for 15 minutes trying to compose something as eloquent as Mark would have done and in the interest of time and emotion I must admit defeat. I will never be the writer he was. I sadly use the past tense because Mark passed away at 3:30 am this morning. I was with him holding his hand. The room was so quiet and it was just us -- actually just the way we both wanted it to be.
I am meeting with the funeral directors this afternoon to make final arrangements. When I know more I will update the site again. Wow, three times in 4 and 1/2 years. I still cannot believe sometimes that Mark fought for so long with such courage, grace and humor and then I remember whom I am talking about. He was one of a kind. The love of my life. I am so lucky that he chose to spend his life with me.
Thank you for your prayers, love and support. I will be leaving the website up for a few weeks to allow people to post messages if the spirit moves them. I have printed out the journal entries and the guestbook log and I was reading them to Mark late last night when he could no longer speak. He could still hear and I swear he was smiling all the way through.
Love,
Michelle
Wednesday, March 7, 2007 8:20 AM CST
Mark’s eloquent description on this web site of his fight against Leroy and his nasty buddies for these past 4 ½ years has given us all an insight into the heroic life of my brother. The saga has entertained us and inspired us. He was truly a man who understood what is important in life and helped us all toward that understanding as well.
His last entry from December was one that was still as hopeful and optimistic as his first back in 2002 when it all started. It doesn’t seem fitting for it to end so abruptly. He was still teaching us and inspiring us until his last day on this earth. He wanted so much to continue this journal because he knew there were so many of you who had genuine concern for him, for Michelle and for his family.
I would like to briefly fill in the gap of the last few months. I won’t attempt to inject the kind of wit that Mark so ably displayed each time he wrote. I would lose horribly in that kind of contest with him. I will, however, use his own words whenever I can. These direct quotes are things I know he would include in this journal if he was able to write this himself.
Mark, Michelle and boys had a nice Christmas at home enjoying each other. January was slow for him as he tried to get stronger following the chemo-embolizations he had just endured during the last few months. We all could see his body slowly getting weaker, though his attitude was still strong. The trip to Miami for the Super Bowl was a huge success. He enjoyed each event he attended over the 4 days he was there. The friends he went with took good care of him. Mark built in periods of down time so that he could get the rest he needed to be ready for the next day.
Mark returned from Miami and prepared himself for the last embolization scheduled for February 12. That procedure never took place. Dr. Belt’s office had run some blood tests and the results indicated there was a significant reduction in liver function. Dr. Yetter, the radiologist who was going to perform the procedure, told Mark that another procedure would be dangerous and probably would not do anything for him. Mark underwent a scan that week and scheduled an appointment with Dr. Belt on Friday, February 16.
Mark was starting to experience more pain and side-effects all week. By Friday he was feeling very weak and his nausea was increasing. Mark, Michelle and I listened to Dr. Belt as he told us that there was nothing else he could do for Mark. He said there were no more treatment options. The nurse told Michelle that he probably had 4-6 weeks left and that hospice should be called in. Mark wasn’t ready to accept any of this. His wheels were turning as they always had. He told Dr. Belt that he still had some of his Sutent left and wanted to take it. He said he had a mid-March appointment at M.D. Anderson in Houston and thought he should check with them. After more back-and-forth with Dr. Belt repeating that there was nothing more he could do, Mark finally looked up at him and without batting an eye asked, “Are you breaking up with me?”
His mission the next day was to go to Max’s basketball game and then take Max to check on the status of his beloved 1969 Chevy truck that was being restored. The truck is Mark’s gift to Max that will be presented to him on his 16th birthday. It was progressing along nicely and would be completed in about 10 days. By the time we got home, it seemed that the outing was getting the best of him. The next 4 days or so were extremely hard on him – he was very tired and couldn’t escape the pain and tiredness. Just as we all thought the end was near, he perked up and decided to come downstairs to greet the numerous visitors who had been coming to see him. It was a nice warm day, so he went out on the back patio to enjoy it and greet more people. While he was out there he took a phone call from his mom’s 80-something cousin. I overheard him telling her, “Yeah, I’ve had a whole lot of visitors to last couple of days. I think they all thought I was a goner, but I’m not there yet.”
Hospice nurses started coming as did a kind, caring nun from the Sisters Servants of Mary. Sister Fabiola came to spend 10 hours with Mark from 8pm to 6am to attend to his needs at night and provide Michelle some peace of mind and allow her to rest also. This worked pretty well the first two nights, but when Mark was feeling better by the third night, he felt he didn’t need her and he actually banished her to the closet. She obliged and continued praying him while in the closet. Needless to say, that was the last time for Sister Fabiola. Mark must have realized that Michelle would be there to lovingly care for him all the way to the end. Michelle provided excellent care all the way through, especially in the difficult final week.
The weekend of February 24-25 was a great time for him. Just to show everyone that he could, he went to Max’s final basketball game of the season and then to watch Max and his cousins swim at the hotel where Michelle’s mom, dad and sisters were staying. On Sunday, he went to the newly refurbished World War I museum at the Liberty Memorial with three work buddies. A very successful weekend, but again, all the activity caught up with him. He was able to spend time with his friends, his brothers and sisters, Cori, Max, Ed, and Michelle, but the pain and nausea were worse and getting harder to control.
He spent most of the next week in bed, not able to get out much and getting weaker. That doesn’t mean he was giving up. He came up with some of his better quips that week. One night while he and Michelle were in bed, they thought some music might be nice. Responding to Michelle’s request of what he wanted to listen to, Mark’s reply was “Don’t Fear the Reaper by Blue Oyster Cult.” The next night, Mark woke Michelle up and challenged her, “You don’t really know the words to the prayer ‘Hail Mary’ do you.” When Michelle replied that she most certainly did, Mark responded with “Prove it.” Of course, neither one would give in, so Mark finally came back with “I double-dog dare you.”
Mark appreciated visitors, but he didn’t want you to “hover” over him as he termed it. He wasn’t shy about letting you know that either. Even though his voice was fading and you could barely hear him at times, he remained the great communicator that he always was. Whenever he sensed someone “hovering”, he simply pointed to the chair next to the bed and commanded the culprit to sit down. Mary Beth, Michelle, Bob and I all were on the receiving end of that command.
The next big event for Mark was the delivery of the completed ’69 Chevy truck. On Saturday, March 3rd, it was ready. He was determined to go along to bring it home to Max. Even though it was obvious to all of us that he physically wouldn’t be able to make it. Mike Jones came down from Milwaukee to help with the delivery. Mike was the one who talked Mark into just waiting for the truck to be brought to him. So Mike, Gary Long, brother Bob, and I went to the shop to bring it back home. Mark was rolled over to a front window where he joyfully watched Max and Cori climb all over it as it glistened in the bright sunshine. He proudly wore his “Classic Chevy Parts” T-shirt and had someone fetch his “Chevy Trucks” hat.
That night as he struggled to get comfortable, he told me “It ain’t over till it’s over.” Not a real original quote, but it sure demonstrated his determination. On Sunday, the 4th, he was getting weaker and needed more medication to get comfortable. He continued to try to track which medications were working, which were not, and when the next doses were to be given. It was hard for him, but as you’ve read throughout this journal this was what he had always done. He decided that he needed a love seat in his room instead of the easy chair that was there. When we switched it around, he wanted us to leave space for the refrigerator from the office that I was to bring up the next day. You can see he was still making plans.
On his last day, he was worried about car titles and other legal affairs. The lawyer in him was still apparent. I tried not to “hover”, but at one point he looked up at me and said, “You bug the sh** out of me.” Most people might think negatively of this, but the look in his eyes as he said it was one I’ll always remember. It was the look of one brother being “onery” to another in a way that only he could. He was gone just a few hours later.
We’ve all sat around the last couple of weeks trying to figure Mark out. We were all wondering what he was waiting for. We thought that he just wanted to see all his visiting friends and co-workers. Then we thought he was waiting for Cori to get back from school. Then it was that he was wanting to see all his brothers and sisters again. We thought that maybe he needed more time with Michelle and the boys. Maybe it was that he wanted to get the truck home. I’ve come to the conclusion that it really was not all that complicated. In the end, the fact was that Mark just wanted to live. He wanted to do everything he had planned – to grow old with Michelle, to walk Cori down the aisle, to see Max become successful and to love Ed the way he always had.
Mark knew several weeks ago that his time was limited and had many ideas about how the funeral should go and who should be in it. That was his practical side. It was just that his body gave out long before his spirit was ready. His spirit will remain with us forever. Our tribute to him should be to live as he did and to love those near to us as he did.
Visitation at the funeral home is Sunday, March 11, from 1:00 to 4:00. The Funeral is Monday, March 12 at 10:00am. Other details and the full obituary can be found at www.kansascity.com and then click on the Obituaries link down the left side.
Thanks for your love and prayers and support.
Dave Dover